First feelings after the diagnosis
For many people, the moment they hear the word “leukemia” splits life into “before” and “after”. Shock, fear, anger, guilt, tears or, on the contrary, feeling nothing at all are all normal human reactions to hard news. This topic explains what you may feel in the first weeks, how to live with these feelings, and when it is important to ask for professional support. You are not alone on this path.
01Short answer
02Simple explanation
When we hear hard news, the brain first tries to protect itself. That is why in the first moments many people feel shock: much of what the doctor says is not remembered, everything feels unreal, and some people feel nothing at all.
Then feelings come in waves: fear, anger, the question “why me?”, sadness and sometimes hope. One day you may feel strong and the next day completely drained. This is not “weakness” but the natural way people adjust.
Many people feel guilt: “Maybe I did something wrong?” Leukemia almost never happens because of something a person did or did not do. You did not cause this illness.
Leukemia often calls for quick decisions: with acute leukemia, treatment sometimes starts within a few days. It is normal to have no time to “work through” your feelings first; you can deal with them as treatment goes on.
The most important thing: you do not have to hide your feelings. Talking to a doctor, a nurse, a psychologist or loved ones means sharing the load. Asking for help is a sign of strength.
03Scientific explanation
How many people struggle? According to a 2011 meta-analysis that combined 70 studies (more than 10,000 people in oncology and haematology settings), depression confirmed by psychiatric interview was found in about 16%, adjustment disorder in about 19% and anxiety disorders in about 10%; some kind of mood disorder was present in 30–40% overall. In other words, strong feelings are often a normal reaction, but a significant share of people need professional help.
What “distress” means: NCCN guidelines describe cancer-related distress as an unpleasant experience of a psychological, social, spiritual or physical nature. It covers a wide range, from normal feelings of vulnerability, sadness and fear to problems that make daily life hard, such as depression, panic and social isolation. Distress is measured with the “distress thermometer” on a scale from 0 to 10; a score of 4 or more usually prompts a closer assessment and support.
When to pay attention: according to the American Cancer Society, one in four people who have or have had cancer experiences depression. ACS and NCI advise telling the team if strong feelings last more than two weeks, or if sleep, appetite, concentration and daily activities are affected. According to NCI, some people develop signs of cancer-related post-traumatic stress, such as recurring distressing memories, avoiding the hospital and constant tension, and these can be treated.
What helps people adjust? NCI and ACS materials say that reliable information, open communication, social support, keeping a daily routine and breaking problems into small steps all help. According to the NCI review on spirituality, faith and spiritual values are a source of strength for many people; for others, illness raises spiritual questions and doubts, and talking about these helps too.
04What happens in the body?
When do you need help urgently?
If you have thoughts of harming yourself or of not wanting to live, tell someone close to you straight away and call emergency services (103 or 112 in Azerbaijan). Contact your treatment team the same day if: you have hardly been able to sleep or eat for several days; panic attacks keep coming back; hopelessness has lasted more than two weeks; or you are finding it hard to take your medicines or come to treatment.
How to help yourself in the first days
Do not try to solve everything at once; think only about the next step. Take someone close to appointments and write down questions and answers. Try to sleep, eat and move a little. If you want to cry, cry. Small familiar things during the day, such as a cup of tea, favourite music or a short walk, give a sense of steadiness.
Everyone reacts differently
Some people want to know everything; others prefer to take in information bit by bit. Some want to talk, others want quiet. Family members may also feel differently. There is no “right” reaction. You can tell your team how much information you want; that is your right.
Information: how much, and from where?
Stories on the internet and outdated statistics often do not reflect your situation and cause needless fear. The outlook varies greatly with the type of leukemia, its genetic features and its treatment. Your most reliable source of information is your hematologist, followed by materials from official organisations. Write down your questions for the next appointment.
Who can you talk to?
A psychologist or psychiatrist, the hospital social worker, a nurse, people who have been through the same thing, support groups, a faith leader or a friend you trust. Sometimes it is easier to talk to an experienced stranger than to people close to you. Ask whether the hospital offers psychological support.
Questions you can ask your team
Is there a psychologist or social worker at the hospital? Who can I talk to about how I feel? What can we do about sleeplessness and anxiety? Is there support for my family? Where can I read reliable information? Can I get in touch with people who have had the same diagnosis?
05From hard news to adjustment
A path many people travel, though everyone’s order and pace are different.
06Common feelings and helpful steps
| Feeling | How it may show | What may help |
|---|---|---|
| Shock, disbelief | The doctor’s words are not remembered, everything feels unreal | Taking someone to appointments, notes, asking again |
| Fear, anxiety | Non-stop thoughts about the future, sleeplessness | Information from the doctor, breathing exercises, a psychologist |
| Anger | “Why me?”, irritation with loved ones or doctors | Naming the feeling, physical activity, talking |
| Guilt | The thought “I did something wrong” | Talking with the doctor about the causes of leukemia |
| Sadness, a sense of loss | Tears, a feeling of lost plans | Making room for sadness, support groups |
| Numbness | Feeling nothing, “autopilot mode” | Patience; it usually passes, and if it lasts, say so |
| Hope, determination | Making plans, setting goals | Keeping this strength without forcing yourself to be “strong all the time” |
* This table is general information. If feelings last or get in the way of daily life, tell your treatment team.
07Key terms
- Shock
- The first reaction to hard news: unreality, confusion or numbness.
- Distress
- Psychological, social, spiritual or physical suffering related to cancer.
- Distress thermometer
- A simple 0-to-10 scale for rating distress.
- Adjustment
- The process of gradually getting used to a new situation.
- Adjustment disorder
- A reaction to stress that is stronger and longer than expected.
- Depression
- Deep sadness and loss of interest lasting at least two weeks.
- Anxiety
- Tension and fear about the future.
- Psycho-oncology
- The field that deals with the psychological and social sides of cancer.
- Social worker
- A professional who helps with practical, social and financial matters.
- Support group
- Meetings of people with similar experiences.
08Key points
- Strong feelings after a diagnosis are normal.
- Feelings can come and go in waves.
- You did not cause your leukemia.
- Get information from your hematologist and reliable sources.
- You do not need to solve everything at once; the next step is enough.
- Talking and accepting help lighten the load.
- Tell your team about hopelessness lasting more than two weeks.
- Thoughts of self-harm are an emergency: ask for help straight away.
09Frequently asked questions
I feel nothing. Is that normal?
Yes, many people feel numb in the first days; it is the brain’s way of protecting itself. Feelings usually return with time. If weeks go by and you feel cut off from everything, tell your team.
Should I look strong in front of my family?
You do not have to. Constantly “holding it together” is exhausting. Sharing your feelings with loved ones often brings them relief too, because they also do not know what to say.
Did I cause my diagnosis?
In most cases the exact cause of leukemia is not known, and it does not usually happen because of a lifestyle “mistake”. If this question troubles you, talk openly with your hematologist.
Does seeing a psychologist mean I am “not coping”?
No. Psychological support is an ordinary part of cancer care. Many hospitals have dedicated psycho-oncologists. Asking for help is a sign of strength and of looking after yourself.
If I do not think positively, will treatment go worse?
There is no evidence that your feelings determine the course of leukemia. Do not force yourself to be “positive all the time”. Sad and frightening days are normal too.
When will it get easier?
Many people feel some relief once the treatment plan is clear and the first weeks have passed. But hard moments can come later too, for example while waiting for results. At those times you can always ask for support.
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.
Is what I am feeling normal in this situation?
Can I talk with a psychologist or social worker at the hospital?
Can I receive information gradually rather than all at once?
Whom can I contact if questions come up before the next appointment?
12Sources
- National Cancer Institute (NCI). Feelings and Cancer
- National Cancer Institute (NCI). Adjusting to Cancer
- National Cancer Institute (NCI). Depression (PDQ®) – Patient Version
- National Cancer Institute (NCI). Spirituality in Cancer Care (PDQ®) – Patient Version
- National Cancer Institute (NCI). Cancer-Related Post-traumatic Stress (PDQ®) – Patient Version
- National Cancer Institute (NCI). Taking Time: Support for People With Cancer
- American Cancer Society. Adjusting to Life With Cancer
- American Cancer Society. Mental Health and Distress
- American Cancer Society. Therapy, Counseling, and Support Resources for People with Cancer
- NCCN Guidelines for Patients. Distress During Cancer Care
- Cancer Research UK. Mental health and cancer
- 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
- Journal of the National Comprehensive Cancer Network, 2019. Distress Management, Version 3.2019, NCCN Clinical Practice Guidelines in Oncology