Talking about Advanced Cancer

Talking with Your Health Care Team

Many people have a team of health care providers who work together to help them. This team may include doctors, nurses, oncology social workers, dietitians, and other specialists. They need to know your goals for care at this stage of your cancer and how you would like to proceed. 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?

Let them know about any questions you have. Their answers will help you know what to expect both now and in the future.

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:

• Decision-making
  Some people want to know the details about their care. Others prefer to know as little as possible. Some patients want their family members to make most of their decisions. What would you prefer? 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, and tell your doctor and family members. Ask that they follow your wishes.
• Pain or other symptoms
  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.
• Know your family’s wishes
  Some family members may have trouble coping with your cancer prognosis. 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. 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.

Talking with Family and Friends

Your loved ones may need time to adjust to the advanced stage of your illness. They need to come to terms with their own feelings. These may include:

• confusion
• shock
• helplessness
• anger
• sadness

Knowing that everyone copes with bad news in their own way will help you and your loved ones deal with their feelings. Let them 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 do:

• 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. Sometimes certain topics are hard to discuss with others. If this is the case, you may want to talk with a member of your medical team or a trained counselor. You could also go to a support group where people meet to share common concerns.

Talking with Your Spouse or Partner

Some relationships grow stronger during cancer treatment, but others are weakened. It’s very common for patients and their partners to feel more stress than usual as a couple. There is often stress about:

• Knowing how to give and get support
• Coping with new feelings that have come up
• Figuring out how to communicate
• Having money problems
• Making decisions
• Changing roles
• Having changes in social life
• Coping with changes in daily routines

Some people feel more comfortable talking about serious issues than others. Only you and your loved one know how you communicate. Some things to think about are:

• Talk things over. This may be hard for you or your partner. If so, ask a counselor or social worker to talk to both of you together.
• Be realistic about demands. Your spouse or partner may feel guilty about your illness. They may feel guilty about any time spent away from you. They could also be under stress due to changing family roles.
• Spend some time apart. Your partner needs time to address his or her own needs. If these needs are neglected, your loved one may have less energy and support to give. Remember, you didn’t spend 24 hours a day together before you got sick.

Talking with Your Kids

Children of all ages can sense when things are wrong. Keeping your children's and grandchildren's trust is still very important at this time. It's best to be as open as you can about your cancer. 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 are 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

Many of the things listed above also apply to teenagers. They need to hear the truth about an illness. This helps keep 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 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

Your relationship with your adult children may change now that you have advanced cancer. You may have to rely on them differently than you have in the past. It’s a normal reaction if you find this 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 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.

Family Disagreements

Any problems your family may have had before the cancer diagnosis are likely to be more intense now. And relatives 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

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 advanced cancer. But studies show that cancer care goes more smoothly when everyone stays open and talks about the issues.