About-cancer/advanced-cancer/talking

Talking about Your Advanced Cancer

Once you are diagnosed with advanced cancer, or your disease has progressed to this point, you will have a number of issues to talk about with your loved ones and your health care team. You’ll need to discuss future steps and what to expect.

Having these talks may not be easy. But knowing your options and sharing them with others 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.)

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 Health Care Team

Your health care team needs to know what you want to know. 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 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? 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 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.

No One Knows the Future

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 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 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 patients 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 in the family

• 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 suggestions:

• 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. Try to be aware of how they're feeling.

• 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 to you and others. 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.