Emotional Effects of Cancer

You may experience many different emotions after treatment is finished. You may be surprised or confused about what you feel. Understanding these emotions and why they surface can help you manage them and feel confident about survivorship.

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Emotional Effects of Cancer: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources.

Living with cancer is an experience that can affect every part of your life. In addition to the effect cancer has on the body, it can also affect the mind and spirit. There may be emotional reactions to all of these changes. When cancer treatment ends, emotional effects may continue and new emotions can surface.

There is no one type of emotional response to cancer survivorship. Each survivor is different and so is each experience. You will most likely experience a mix of emotional reactions, and some may be positive. For example, you might feel satisfaction about personal relationships that have deepened or discover increased confidence that comes with finding strengths within yourself. 

On the other hand, some emotional reactions might be uncomfortable or confusing. At times, you may feel overwhelmed by conflicting feelings. You are not alone if this is how you feel during your cancer journey. Many cancer survivors say that managing their emotions can be just as difficult as dealing with medical issues.

Will all cancer survivors experience emotional effects?

It is a common experience to have changes in emotions or mood throughout the experience with cancer. For example, at the time of your diagnosis, you may feel fearful, sad and worried. After deciding on a treatment plan, you may feel more confident. During treatment, you might have many changes in your mood. Cancer survivors often describe this time as an emotional roller coaster—some days you may feel “up” and other days feel “down.”

After cancer treatment ends, many survivors are surprised to find that they continue to experience changes in their emotions or mood. For some, completing active treatment may bring a time of emotional distress. Some survivors describe the time after treatment as one of the most emotional—and unusual—periods of their lives. There may also be similar reactions adjusting to life after treatment. Understanding these emotions can help you manage them and feel more confident about survivorship.

You may have all, none or only a few of these feelings and reactions. Every survivor feels and responds differently. Knowing that these types of emotional reactions are common may be helpful to you. This can be a starting point for living well and accepting all types of feelings.

Why are emotional effects after treatment confusing?

Many survivors expect to be thrilled and feel relieved after cancer treatment ends--and some do feel this way. However, you may be surprised to find that there can be uncomfortable feelings and unanswered questions such as:  

• Is the cancer gone for good?
• Will I face late effects from the cancer or the treatment?
• Shouldn’t I feel completely happy now that the treatment is gone?
• What is going to happen now?
• What should I do now that I no longer see my cancer care team?

Emotions often surface unexpectedly. Knowing what some of these emotions are can help you understand what you are experiencing and help you find ways to manage your reactions.

The mixture of feelings you have when treatment ends and the process of moving on with life may be surprising for many reasons including:

• Unacknowledged feelings about your experience with cancer may surface. Until now, you may have placed your energy into managing the crisis of the diagnosis and treatment. Your focus was likely on finding a health care team, choosing the best treatment options, and getting through the treatments. You may have put off paying attention to your feelings about the cancer experience.
• You may not have been prepared for emotional effects. You may have read and heard a lot about the physical and practical aspects of cancer and what you might expect to happen. However, you might not have read or heard as much about any emotional stress that you could experience. Emotional effects are frequently overlooked in discussions about important side effects of treatment and survivorship.
• People around you may not understand the emotional stress that completing treatment can bring. Family members, friends and even your health care team may be ready to celebrate the victory of your beating cancer. They may expect you to get back to normal and get on with your life. Acknowledging fears or sadness when others are celebrating your success can be difficult.

What are some emotional effects associated with the end of treatment?

When cancer treatment ends, you might feel excited about your future. You are likely to feel relieved that treatment is over and ready to move on with your life. On the other hand, you could feel worried about the future, angry that you had cancer, or embarrassed that you had to rely on others for help and support. Many people have mixed feelings.

When cancer treatment ends, you may have none, some, or all of the feelings and reactions listed below. You also may have thoughts, feelings and reactions that are not mentioned.

Fear of recurrence

Will the cancer come back? Fear of recurrence is one of the most common concerns for survivors. You might feel especially worried about the cancer coming back if you continue to have symptoms or if you have long-term effects from the treatment.

You may also feel at risk because you are no longer actively taking treatments. This may make you feel helpless against a possible recurrence of cancer. Some survivors worry that their medical condition is not being watched as closely by the health care team during follow-up appointments as it was during active treatment.

Talk with your doctor about your concerns about recurrence of cancer. Ask him or her to schedule you for regular follow-up health care and screenings. Find out about the best ways to live healthy to help prevent a recurrence.

 Anxiety or feeling worried

Some survivors say that the time right after treatment ends is filled with insecurity and anxiety. You may worry that something bad is about to happen. Perhaps it feels like the threat of cancer coming back is constantly hanging over your head. Certain occurrences may cause you to feel anxious such as health care follow-up appointments. The symptoms of common illnesses, like the flu or a cold, might be stressful. You may find that questions about how the cancer experience will affect your future cause you to feel anxious.

Talk with loved ones and members of your health care team about your concerns. Ask for a referral to a licensed social worker or counselor to help you find ways deal with worries.

Worries about self-image or body image

If you experienced physical changes during cancer treatment, you may worry about how you look to other people. Many survivors feel differently about body image after cancer and treatment. Your sense of who you are and how others see you can be challenged as you try to adjust to post-treatment survivorship.

If you are worried about physical changes, talk with your doctor about your concerns. Ask what can be done to make things better.

Sadness

Sadness is a feeling of unhappiness, unrest or mental suffering. These types of emotions can be caused by an unexpected change, stressful situations or a loss of some kind. Some find sadness to be one of the most surprising of all the post-treatment emotional effects. There may be expectations about feeling happy about surviving cancer treatment. However, feeling sad is a common response, especially in the early months after treatment ends. During the period when you had to focus your energy on the cancer diagnosis or treatment, you may not have had a chance to let down and really think about the changes that were happening in your life. There may have been losses that were painful and hard to accept, and feeling sad is a normal response during a time of adjustment.

Although it is normal for survivors to feel sad as they adjust to the changes that have occurred, sadness should not last for a long time. Talk to loved ones and your health care team if sadness begins to feel overwhelming. Report these types of long-term feelings to your doctor right away.

Depression

Depression is a real and treatable medical problem. It is something different than sadness. However, just as with sadness, depression may be caused by stressful situations, unexpected change or loss. The sadness that comes with depression lasts for a longer time and may be very intense.

Some symptoms of depression include:

• Long-lasting changes in eating habits
• Loss of interest in activities you usually enjoy
• Problems with sleep
• Feelings of hopelessness, helplessness or despair
• Inability to experience joy
• Problems with concentration
• Thoughts about hurting yourself or others

Depression is a serious condition. It can be caused or made worse by chemical changes in the brain. Treatment may include medication and counseling. There is no need for you and your loved ones to suffer with depression.

If you have any of these symptoms or other issues that are keeping you from feeling good, talk with your health care team. If you have thoughts about hurting yourself or someone else, seek help immediately. You can call your hospital’s emergency room to see a mental health professional right away.

Grief and loss

Losing someone or something that is important naturally causes pain and sadness. Grief is the normal human response to loss. It is more than simple sadness or depression because it happens over a long period of time.

Survivors and their families may face many types of losses as a result of their experience with cancer. Some examples are the loss of a job or career, the loss of financial or emotional security, the loss of physical function or health, or the loss of an important goal or lifelong dream. Coming to understand and manage grief is a process that generally happens over a long time and includes a wide range of thoughts and feelings. The process of grieving often includes emotions such as denial, anger and acceptance.

Many survivors find comfort in talking with someone they trust such as a loved one, friend or a member of a faith-based organization. A support group or a licensed social worker or counselor can also help survivors and their loved ones deal with loss and grief that does not go away.

Guilt

It can be surprising to discover feelings of guilt after completion of cancer treatment. Feelings of guilt happen when you think you are to blame for something. You may think that something you did caused your cancer. You may feel guilt because you survived while others did not. You may worry that there has been too much of a burden placed on loved ones. Whatever the cause, guilt is a complex emotion that can be difficult to acknowledge and express.

Cancer survivors do not need to carry the burden of guilt. If you have these feelings, start by acknowledging them. This can be a first step towards letting guilt go. Talk with loved ones and others you trust about how you feel. A licensed social worker or counselor can help you release these feelings and move forward with your life.

Uncertainty

After cancer is diagnosed, it is natural to feel unsure about different aspects of life. For example, the condition of your health can be a primary area of concern. You may find yourself becoming nervous as your follow-up appointments or important anniversary dates get closer, such as the date of diagnosis or the date you completed treatment.

Cancer survivors sometimes worry more than usual about health concerns. Having a cold or headache may raise concerns. It may feel challenging to try to make plans for the future. Even though uncertainty affects people in different ways, all cancer survivors live with some uncertainty about their future. Some find that staying focused on the present is helpful. Living this way can help you avoid worrying about things that may never happen.

Be certain to ask your doctor to help you develop a follow-up health care plan after treatment is done. This is a survivorship plan for future health care that includes recommendations for medical appointments and screenings. Such a plan helps you get the best ongoing health care and may lessen feelings of uncertainty.

Anger

At times, cancer can leave you feeling cheated out of the chance to have a normal life. Physical or emotional aftereffects of treatment may lead to anger when reminded of losses that occurred because of cancer. Anger is an emotion that can occur on many levels. It can range from frustration and mild irritation to rage. Challenges can also occur in the financial, spiritual or social areas of life.

A certain amount of anger is normal. However, some survivors need help to get past strong feelings of anger. Talk with your doctor if such feelings do not go away. Ask for a referral to a licensed social worker or counselor to help you get through anger that is affecting your life. You may also find that talking with other cancer survivors, loved ones or friends is helpful.

Emotional numbness

The sensation of being drained, worn out or just unable to feel anything because of overwhelming experiences is common among survivors. After the stress of cancer treatment, you may feel unable to manage anything more. Some survivors shut down feelings as a means of protection. If you often find yourself with thoughts such as “I just don’t care” or “It doesn’t matter,” you may be experiencing emotional numbness.

Your health care team and loved ones may be able to help you sort out these types of feelings. Working with a licensed social worker or a counselor can provide support and guidance during this process.

Spiritual distress

The ability to make sense out of life’s experiences is important to your sense of well-being. You may look for different ways to understand your cancer experience, especially if your treatments were especially difficult or your illness was seriously life-threatening. Sometimes it can be hard to understand why things happened the way they did.

A search for meaning often begins at diagnosis and can continue for many years after treatment is over. It may be hard to understand why this happened to you, especially if you are living with uncertainty about health and your future. The picture of your life the way it is now may be very different from the way you thought it would be.

You may experience spiritual distress as you redefine your values and goals and search for what now gives your life quality and meaning. Talking with a loved one, clergy person or a hospital chaplain can be helpful as you go through this process.

What is emotional distress?

Experiencing emotional effects some of the time is normal and common during cancer survivorship. However, feeling depressed, worried, stressed or overwhelmed most of the time is a sign that you need help managing your emotions. During such a time, talk with a mental health professional or your health care team about the cause and treatment choices for any emotional effects. This is especially true if they are very intense, last a long time, or interfere with your daily activities.

You could be at higher risk for emotional distress if:

• You have memories of very upsetting and difficult experiences during your treatment
• You have a previous history of emotional distress
• You do not have enough social and emotional support
• You are experiencing problems in relationships with loved ones and friends
• You are experiencing problems with practical matters such as employment, insurance or finances
• You have ongoing or long-term effects related to cancer and treatment such as:
  • Osteoporosis
  • Fatigue
  • Insomnia
  • Chronic pain
  • Cognitive problems (problems with thinking or concentration)
  • Sexual dysfunction
  • Infertility

What are some situations that might lead to emotional distress?

You and your family may be dealing with a broad range of issues including physical, social, emotional, financial and spiritual challenges. It is a myth that you can just pick up your life where you left off. Believing this can make living with these challenges even more difficult. It also increases the struggle in dealing with uncomfortable emotions.

Some examples of situations that might lead to emotional distress include:

• Concerns about making plans for the future of you and your family
• Difficulty doing the things you used to do, such as planning and cooking meals, walking around the block or performing job duties
• Challenges adapting to disabilities or to an awareness of being different
• Experiencing prejudice or discrimination because of your health history
• Adjustments to new relationships with friends, co-workers and your health care team
• Concerns about whether and when to tell others about your cancer
• Unresolved questions, such as “Why me?”
• Stress in your relationships
• Financial problems as a result of your cancer experience
• Concerns that you cannot live up to the expectations of others
• Thinking that you must go back to your life as it was before cancer
• Uncomfortable experiences and emotional reactions by loved ones, friends and coworkers

What are some signs that you may be experiencing emotional effects?

Emotions can trigger certain reactions in your body, in your behavior and in the way you think about things.

• Physical reactions might include:
  • Crying often
  • Feeling tired (fatigue)
  • Feeling generally “under the weather”
  • Difficulty sleeping
  • Feeling tense or anxious and worried
  • Change in eating habits

• Behavior changes can include:
  • Avoiding people or things that remind you of your cancer experience
  • Needing a lot of reassurance from loved ones and friends
  • Lacking confidence in yourself
  • Withdrawing from people and normal activities
  • Feeling irritable and moody much of the time
  • Overreacting to situations
  • Having problems communicating with others

• Changes in the way you think about things might include:
  • Not being able to forget about your cancer experience
  • Increased watchfulness or caution about your health
  • Not being able to concentrate or pay attention
  • Difficulty making decisions
  • Getting angry or frustrated easily

Will the emotional aftereffects ever go away?

Emotional reactions to cancer can change over time. Your feelings at the beginning of your journey with cancer may be very different from those you have at the end of treatment and beyond. Gradually, as you adjust and allow yourself to become comfortable with your feelings, many of the emotional effects will become less intense and less frequent.

Researchers are studying and learning more about the long-term emotional effects of the cancer experience. Their work shows that most survivors can adjust in positive ways over time to the stresses of cancer and its treatment. Memories of the distress of diagnosis and treatment usually begin to fade. You might find that other life events become more important and the cancer experience less important.

Even so, reminders of your experience with cancer can bring up emotional effects for years after treatment has ended. Examples of reminders might include:

• Sounds, tastes or smells that remind you of treatment
• Routine medical appointments
• Hearing about another person’s cancer experience
• Anniversary events, such as the date of diagnosis or the date of completing treatment
• Important events with family or friends, such as graduations, birthdays, and holidays
• Ongoing health problems because of aftereffects of treatment
• Times of crisis or unusual stress in your life

Can strong emotions cause cancer to come back?

Researchers have studied the relationship between emotions and cancer extensively. There is no convincing evidence that emotions can cause cancer. However, there is research supporting the idea that taking a positive approach to treatment and playing an active role in your care can improve both your physical and mental sense of well-being.

Why is paying attention to emotional aftereffects important?

Paying attention to your feelings, especially uncomfortable feelings, can be hard when you and others just want and expect to just get on with life. Yet paying attention to emotional reactions after treatment has ended is important for many reasons.

Expressing emotions instead of keeping them inside lowers stress and promotes mental and physical health. Ongoing stress can affect your hormones and your immune system. This may slow down the healing process. There is evidence that social support and professional mental health support can help to improve the quality of life for cancer survivors.

Paying attention to your feelings can also help you:

• Recognize positive feelings such as courage, self-confidence, hope and gratitude
• Live more fully in mind, body and spirit
• Communicate better with loved ones, friends and health care team members
• Maintain good relationships with family and friends
• Develop strengths that can help you manage other stress in your life
• Gain awareness and understanding of your experiences

Cancer brings changes that are not always negative. The experience may even bring about healthy personal growth. Your emotional responses to your situation can become important resources as you move forward with life.

This document was produced in collaboration with:

Bebe Guill

Works Cited

Facing Forward: A Guide for Cancer Survivors. National Cancer Institute, NIH Publication No. 94-2424. 1-800-4-CANCER.

Fox, Ph.D. Bernard H., The Role of Psychological Factors in Cancer Incidence and Prognosis, Oncology, Vol. 9, No 3, March 1995.

Harpham, MD, Wendy Schlessel, After Cancer: A Guide to Your New Life. Harper Publishing, 1995.

Keene, Nancy, Wendy Hobbie, and Kathy Ruccione. Childhood Cancer Survivors: A Practical Guide to Your Future. Cambridge, MA: O’Reilly & Associates, 2000.

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Emotional Effects of Cancer: Suggestions

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources.

There are many things you can do that can help you manage emotions after cancer treatment ends. Try taking some of the following steps to see what works best for you. You can also seek other ideas from your health care team, loved ones, other cancer survivors and friends.

• Talk about your feelings with others.
  
  Holding negative feelings inside and not talking about them can make them seem to grow stronger and last longer. Releasing feelings can help to relieve stress. Share your concerns with people you trust.
  
• Try not to judge your feelings.
  
  Feelings are sometimes uncomfortable and hard to understand. However, your feelings can give you important insights as you come to terms with your experience with cancer and make decisions about your future. Be patient with yourself and what you are feeling. If emotions become overwhelming and interfere with your normal activities, talking with a mental health professional can help.
  
• Talk to your health care team about any distress you are experiencing.
  
  Members of your health care team can evaluate your symptoms, suggest treatment options, and help you find other resources that can help. You can use a health journal to write down all of your experiences and emotional concerns. Take the journal with you to health care appointments. This can help you tell the team what you are feeling. It may also provide some insights into what triggers certain emotions.
  
• Consider joining a support group.
  
  Support groups provide a safe environment to share experiences with other survivors, learn new ways to handle difficult situations and talk about emotions. You will see different styles of managing emotions and adjusting to life as a cancer survivor. If you are uncomfortable talking about certain subjects with your family or friends, a support group offers you a place to talk freely about what is important to you. Cancer support groups exist in most communities.
  
  Some ways to find out more about support groups in your area:
  
  
  • Ask your health care team for suggestions. Some cancer programs offer support groups for cancer survivors and their loved ones right in the clinic or hospital.
  • Call a nearby cancer center or university hospital and ask about support groups.
  • Call LIVESTRONG SurvivorCare at 1-866-673-7205 for emotional support and help locating ongoing support in your community.
    
• Consider finding a counselor.
  
  Discuss your needs with loved ones and your health care team. This helps you clarify your needs and decide what kind of counseling is best for you. 
  
  Ask a member of your health care team for a referral to a therapist who works with cancer survivors. Most cancer centers employ oncology social workers who are specially trained to work with survivors and their loved ones. Even if you are not a patient at a cancer center, the oncology social worker may meet with you or refer you to someone else in the community for assistance. 
  
  Interview the counselor to find out if he or she is the right professional for you. Speak honestly and let him or her know your reasons for wanting to work with a counselor.
  
  Examples of questions to ask the counselor:
  
  
  • What type of education and background do you have?
  • What license do you have?
  • What is your experience working with people with cancer?
  • What do you understand about emotional responses to this illness?
  • Do you accept my insurance?
  • Do you work with people who are anxious or depressed?
  • Do you know about community resources for people with cancer?
    
• Take action for an immediate crisis.
  
  If you are having thoughts about hurting yourself or someone else, or if you feel that you cannot go on anymore:
  
  
  • Dial 911 from any phone or call your local emergency response number for immediate help.
  • Call 1-800-SUICIDE (1-800-784-2433) to speak with a trained crisis worker. They answer calls 24 hours a day, every day of the year.
    
    In addition, you should:
    
  • Contact and talk with your health care team.
  • Contact and talk with a trusted loved one, friend or faith based leader.
    
• Look for creative outlets that help you safely release your feelings.
  
  Art activities like drawing, painting and working with clay or other materials can help you to express feelings that are difficult to put into words. You don’t have to have any formal training or equipment. Music, poetry and dance movement are also activities you can use to express yourself and relieve stress.
  
• Write your thoughts and feelings down in a journal.
  
  Keeping a diary or journal may help you understand and find meaning in what is happening in your life. Writing down your thoughts and feelings about your experiences can help you feel more in control. It may also help you to release emotions that you are holding inside. You can choose to keep all of your writing completely private or share your journal with selected friends and loved ones.
  
• Consider exercise.
  
  With your physician’s approval, choose an exercise program that is appropriate for your condition and that you enjoy. Even a light walk around the block or gentle stretching can help you regain your emotional balance and relieve stress.

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Emotional Effects of Cancer: Additional Resources

The resources listed below provide more detailed information and support services to help you with the emotional effects of cancer.  Please read the Detailed Information and Suggestions document for more information and questions to ask.

LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare

LIVESTRONG SurvivorCare offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about treatment options and matching to clinical trials or treatments in development. Counseling services and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations including CancerCare, Patient Advocate Foundation and EmergingMed.

American Cancer Society
www.cancer.org

The American Cancer Society (ACS) offers information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area. You can join online groups and message boards. Some information on the website is available in Spanish, Chinese, Korean and Vietnamese. ACS specialists can answer questions 24 hours a day by phone or email.

American Psychosocial Oncology Society (APOS)
www.apos-society.org

APOS works to ensure that all people with cancer have access to psychosocial services as a part of quality cancer care. They provide mental health care referrals to local counseling and support services throughout the United States. If no services are available in your community, a professionally trained Helpline staff member will provide crisis counseling over the phone. To use this service, call the toll-free number.

Association of Cancer Online Resources (ACOR)
www.acor.org

ACOR.org provides cancer survivors an opportunity to meet and talk with other survivors online. This organization provides over 100 online communities for cancer patients, families and caregivers. These include disease-specific groups for many types of common and rare cancers. Discussions are generally related to cancer treatment and survival. Some mailing lists and discussion groups are available in languages other than English. ACOR will create additional online communities focused on cancer upon request.

CaringBridge
www.caringbridge.org/ext/livestrong

CaringBridge is a nonprofit organization that offers free, easy-to-create web sites to connect family and friends during a health crisis. This site can help ease the burden of keeping loved ones updated. It provides a way for them to send their support and encouragement. Step-by-step instructions are provided for creating and updating the site you create.

Cancer Hope Network
www.cancerhopenetwork.org

Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families.  They offer support by matching cancer patients or family members with trained volunteers who have already undergone and recovered from a similar cancer experience. You can submit your request by phone or by email. A volunteer will try to contact you within 24 hours.

Depression-screening.org
www.depression-screening.org

The National Mental Health Association sponsors this website that offers free and confidential screening for depression. The website provides information on the symptoms of depression, personal stories from people who have overcome depression, treatment options, where to find help, and how to pay for treatment. Information on the site is also available in Spanish.

National Hopeline Network
www.hopeline.com

The National Hopeline Network consists of crisis centers that are dedicated to suicide prevention, intervention and healing. Trained crisis workers will talk with people who are feeling emotionally stressed, depressed or are needing to talk about how they are feeling. They also help people to find services and resources in their own community.

National Mental Health Association
www.nmha.org

The NMHA Web site contains information and fact sheets on depression and a wide range of other mental health topics. An online database allows you to search for a counselor in your area, or you can call the toll-free number above for a list of providers. Some information on the site is available in Spanish.

U.S. Institutes of Health - National Cancer Institute (NCI)
www.cancer.gov

The National Cancer Institute’s website provides accurate information about the challenges cancer can bring. You can search for information by cancer type or topic. You can find information about treatment, financial and insurance matters. You can also learn how treatments in development work and search for a clinical trial in your area. This site also has a good dictionary of cancer terms, drug information and other publications.

Cancer information specialists can answer your questions about cancer and help you with quitting smoking. They can also help you with using this Web site and can tell you about NCI's printed and electronic materials. The knowledgeable and caring specialists have access to comprehensive, accurate information on a range of cancer topics, including the most recent advances in cancer treatment. The service is confidential, and information specialists spend as much time as needed for thorough and personalized responses.

911 (emergency response number)

If you are having thoughts about hurting yourself or ending your life, or if you feel that you can't go on anymore, dial 911 from any phone or call your local emergency response number for immediate help.

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