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Talking to Others about Your Advanced Cancer

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If you have a terminal cancer diagnosis (also called metastatic or end-stage cancer) or your disease has progressed to this point, you will need to discuss future steps and what to expect with your health care team and loved ones.

Having these talks may not be easy. But knowing your options will make it easier for you to move forward with your care. (Your loved ones may also want to go to our caregiver section for more tips on talking about advanced cancer.)

Talking to Your Doctor about Advanced Cancer

When you have a terminal cancer diagnosis, your doctor and other members of your health care team need to know what you want to know. Many people have a team of health care providers who work together to help them. It's important to sit down with them and talk about future steps and what to expect.

Ask all the questions you need to in order to make the right decisions for yourself. This team wants to know your goals for care at this stage of your cancer and how you would like to move forward. Tell them what is most important to you now. For example, is it:

  • controlling symptoms and feeling comfortable?
  • receiving care at home?
  • being open to experimental treatments?
  • setting a date to attend a special event?

Their answers will help you know what to expect both now and in the future. For examples, see Questions to Ask Your Doctor about Advanced Cancer.

It's important to have good communication and an understanding of your goals with those who will be caring for you. Here are some topics you may want to discuss with your doctor or other members of your health care team:

  • Who will make the decisions about your cancer care.
    Some people want to know all the details about their care. Others prefer to know as little as possible. Some patients want to make all the decisions, while others want family members to make most of their decisions. What would you prefer?
  • What information you want to know about the stage of your cancer.
    Decide what you want to know, how much you want to know, and when you’ve heard enough. Choose the amount of information that is most comfortable for you. Let your doctor and family members know what that is and ask that they follow your wishes.
  • Your pain control options.
    Some people assume that there will always be severe pain with advanced cancer. This does not have to be the case. Pain can be managed throughout the course of the disease. People whose pain is managed are able to focus on enjoying life. They can sleep better, enjoy friends and family, and focus on the daily activities they enjoy. It’s important to be honest and open about your pain. Tell your doctors if and where you have pain. To learn more about pain control, see Cancer Pain Control.
  • What your family wants to know about your cancer.
    Some family members may have trouble coping with your cancer prognosis. This is even more true when it is metastatic or terminal. They may not want to know how far the disease has advanced or how much time doctors think you have. If you feel comfortable, ask your family members how much they want to know about your condition. Then let your health care team know their wishes. Do this as soon as possible. It will help avoid conflicts or distress among your loved ones. If you haven't done so already, it is important to fill out advance directives.

Knowing How Long to Live with Advanced Cancer

It's normal for people to want to know how long they will have to live. It's also natural to want to prepare for what lies ahead.

But no one knows the future. Predicting how long someone will live is difficult. Your doctor has to take into account the type of cancer, treatment, past illnesses, and other factors. Your doctor may be able to give you an estimate. But keep in mind that it's a guess. Every patient is different.

Some patients live long past the time the doctor first predicted. Others live a shorter time. Also, an infection or other complication could happen and change things. Even the doctor can't know the answer for sure. And doctors don't always feel comfortable trying to predict how long someone will live.

In truth, none of us knows when we are going to die. Unexpected events happen every day. The best we can do is to try and live fully and for today.

Talking to Family and Friends about Advanced Cancer

When you tell your loved ones that your cancer is terminal, they may need time to adjust to the news. They need to come to terms with their own feelings. These may include:

  • confusion
  • shock
  • helplessness
  • anger
  • sadness

Everyone copes with bad news in their own way. Knowing this will help you understand their feelings. Let people know that the best thing they can do for you is to be themselves and feel at ease with you. Ask them to listen when you need it, rather than try to solve every problem. Many people are comforted by sharing feelings and taking the time to say what they need to say.

Keep in mind that not everyone can handle the thought that they might lose you. Or some people may not know what to say or do for you. As a result, relationships may change. This isn't because of you, but because others have trouble coping with their own painful feelings.

Some things you could say if you'd like to:

  • Tell them that you’re still the same person you always were.
  • Let them know if it's alright to ask questions or tell you how they feel.
  • Remind them that often just being there for you is enough.

It's also okay if you don’t feel comfortable talking about these issues. What you say to others is up to you. You also get to decide when or if you want to respond at all.

 

See NCI’s Planning the Transition to End-of-Life Care in Advanced Cancer for additional information on care decisions and end-of-life planning.

Talking with Your Spouse or Partner about Advanced Cancer

Talking about serious issues is never easy. It's hard to face an uncertain future and the possibility of death. Often people are uncomfortable or don't know what to say. 

It’s likely that you and your loved one are both having the same thoughts and fears about the end of life. With an end-stage cancer diagnosis, there will come a time when you will need to talk about these issues together. These might include:

  • when to stop cancer treatment
  • preparing for the future
  • talking about living arrangements and where to get care
  • fears about death
  • wishes at the end of life

There is no right or wrong way to communicate. But studies show that people who talk things out feel better about the care they get and the decisions they make. A few things to remember are:

  • You can still have hope for comfort, peace, and acceptance. It's a good idea to talk about the fact that the future is uncertain. Avoiding important issues only makes them harder to deal with later. Talking over your concerns can bring comfort to both of you, as well as others in your life.
  • Be honest about your feelings. It's important to get any thoughts or concerns you have out in the open.
  • Know that the way each person handles situations is different. You each have to process your thoughts and fears in your own time and own way.

If you have trouble talking about these issues, ask for professional advice. A counselor or other mental health expert may be able to help you and your loved one explore topics that you don’t feel able to on your own. You can also talk about other concerns and feelings that you are dealing with right now.

Talking with Your Children about Advanced Cancer

Children of all ages can sense when things are wrong. Keeping your children's trust is still very important at this time. It's best to be as open as you can about the fact that your cancer is terminal. They may worry that they did something to cause you to get sick. They may be afraid that no one will take care of them. They may also feel that you are not spending as much time with them as you used to.

Some children become very clingy. Others get into trouble in school or at home. Let the child's teacher or guidance counselor know what is going on. It helps to keep all the lines of communication open, both with your kids and with the other people in their lives.

Although you can't protect them from what they may feel, you can prepare them. If they ask if you are going to die, you can tell them the truth with comfort and understanding. What you tell them and how they take it will depend on their age and what they have gone through already in life. While you can't protect them from pain and loss, you can help them cope with it and understand it as part of life. Try to:

  • Be honest. Tell them you're sick and that the doctors are working to help you feel comfortable.
  • Let them know that nothing they did or said caused the cancer. And make sure they know that they can’t catch it from you or others.
  • Tell them you love them. Tell them it’s okay to be upset, angry, or scared. Encourage them to talk.
  • Be clear and simple. Children do not have the focus of adults. Use words they can understand.
  • Let them know that they will always be taken care of and loved.
  • Let them know that it’s okay to ask questions. Tell them you will answer them as honestly as you can. In fact, children who aren’t told the truth about an illness can become even more scared. They often use their imagination and fears to explain the changes around them.

Talking with Your Teenagers about Advanced Cancer

Many of the things listed above also apply to teenagers. They need to hear the truth that your cancer is end-stage. This may help them from feeling guilt and stress. But be aware that they may try to avoid the subject. They may become angry, act out, or get into trouble as a way of coping. Others simply withdraw. Try to:

  • Give teenagers the space they need. This is especially important if you have to rely on them more than before to help with family needs.
  • Give them time to deal with their feelings, alone or with their friends.
  • Let your teenager know that they should still go to school. Tell them they should keep taking part in sports and other fun activities.

If you have trouble talking with your teen about your cancer, you might want to ask for help. Try asking a close friend, relative, or health care provider for advice. You could also go to a trusted coach, teacher, or youth minister. Your social worker or doctor can help you as well.

Talking with Your Adult Children about Advanced Cancer

Your relationship with your adult children may change when you learn that you have terminal cancer. You may have to rely on them differently than you have in the past. It’s a normal reaction if you find that this is hard for you. Many people find this difficult. After all, you may be used to giving support rather than getting it. Or it may be hard for other reasons. Perhaps your relationship with your children has been a more formal or distant one.

Adult children have their concerns, too. They may become fearful of their own mortality. They may feel guilty because they’re overwhelmed by the many demands of their lives as parents, children, and employees and unable to be there with you as much as they want.

As your illness progresses, it helps to:

  • Share decision-making with your children.
  • Involve them in issues that are important to you. These may include treatment choices, plans for the future, or types of activities you want to continue.

Reaching out to your adult children and openly sharing your feelings and wishes may help them cope with your cancer. It could bring you closer to them as well. It may also help lessen any fears or conflicts that may arise between siblings when important decisions need to be made.

For more detailed information on talking to children about cancer, see the NCI booklets, When Someone You Love Is Being Treated for Cancer and When Someone You Love Has Advanced Cancer.

Talking to Children about Death

Children of all ages may wonder about dying, life after death, and what happens to the body. If someone close to them has advanced cancer, their world may be changing monthly, weekly, or daily. That’s why it's important to be honest with them and prepare them each step of the way. 

It's important to answer all their questions. If not, they may imagine things or make up their own stories. Let them know that everything is being done to keep you comfortable. 

Tell them the truth. Children deserve to be told the truth about a poor prognosis. Hiding the truth from them leaves them unprepared for your death and can prolong the grief they will feel. And if you don't talk about your condition or don't tell the truth about it, your children may have a hard time trusting others in the future.

By including children in the family crisis, you can give them healthy ways of coping with what is happening. You can show them how to hope for the best while accepting the likely outcome of death. If you're honest and up front, you're teaching them that death is a natural part of life. Your honesty shows them it’s okay to talk about death.

Counselors and oncology social workers can also suggest ways to talk to kids about death in ways they understand. They may know of local or national programs that offer help to children in these situations. Or they may suggest books, videos, and websites that explore these topics.

Family Disagreements with Advanced Cancer

Any problems your family may have had before the cancer diagnosis are likely to be more intense now that you have learned the cancer is terminal. And relatives that you or your family members don't know very well or who live far away may be around more often, which may complicate things.

It's common for families to argue over things such as:

  • treatment options or whether to continue treatment at all
  • when to use hospice care
  • feelings that some family members are helping more than others
  • money issues

Although everyone may be trying to do what's best, some family members may disagree as to what this means. Everyone brings their own set of beliefs and values to the table, which makes these decisions hard. It’s common for families to ask their health care team to hold a family meeting or to help with communication in some way.

Ask for Help or a Family Meeting

Often, talking with the people closest to you is harder than talking with anyone else. Some families are good at communicating with each other. And others have trouble expressing their needs to each other, even if they get along very well. Or sometimes families simply don’t get along.

If you don't feel comfortable talking with family members, ask a member of your health care team to help start a conversation. You could also ask a social worker or other professional to hold a family meeting. This may help family members feel more comfortable to openly express their feelings. It can also be a time for you and your family to meet with your team to solve problems that may have arisen and set goals.

It can be very hard to talk about the goals for care when someone has terminal cancer. But studies show that cancer care goes more smoothly when everyone stays open and talks about the issues.