Advanced cancer can be very scary and may very well be the hardest thing you and you family have ever faced. If you and your family have ongoing concerns that interfere with your lives, or if you just want to communicate and cope the best you can, you should talk with a licensed mental health professional. It can be very comforting to talk with an expert about your unique situation. Social workers, psychologists, and psychiatrists are all licensed mental health professionals who can be found through your oncologist or through the nearest large hospital in your area. Even one session with a licensed mental health professional can help you and your family to focus on what matters most in your lives at this time. Your cancer care team will work with you to find the right professional for you.

Dealing with worry and the unknown

Learning that you have advanced cancer may make you feel lost and afraid. This is normal. You may have questions such as:

• What is going to happen to me?
• Have I done everything I should have done?
• What are the other options?
• Am I going to die?
• How much control will I have over my life? over my death?
• Will my wishes be followed?
• How much pain and suffering will I have?
• What if I feel that I can't take much more treatment?
• How can I burden my family in this way?
• Will this be too much for my family to bear?
• What am I going to do about money?
• How long am I going to have to go through this?
• What happens when I die?

The list of fears may be overwhelming even to think about, much less go through. Worrying may make it hard for you to focus. You may even have tight muscles, trembling, and shakiness. Restlessness, shortness of breath, heart racing, sweating, dry mouth, and grouchiness are other signs of worry. But few people have all of these symptoms. And there are professionals who can help you manage these concerns. Along with your doctor and nurse, there are social workers, psychologists, psychiatrists, and pastoral counselors who are specially trained to help you talk about your concerns, control your fears, and make meaning of what you are going through. They can also support your family. Your doctor will know the local mental heath experts in your area.

Managing worry

• Sometimes just talking about feelings helps to relieve worry.
• Trying to relax with deep breathing and other techniques can be helpful. It works best if you practice and do it regularly.
• It’s important to let yourself feel sad and frustrated, without feeling guilty about it.
• Picking the right person to talk with can be important. For some, that person will be a minister or a good friend. For others, it will be a family member.
• Spiritual support is helpful for many people.
• If your worry is upsetting to you or your family and lasts for long periods of time, it is important that you request a referral to a mental health professional who is specially trained to work with cancer patients.

Along with these measures, a doctor may be able to suggest medicines to treat anxiety and depression. Short-term use of these drugs is rarely a problem. It can be just what you need to regroup and go forward.

Finding hope

Hope is a necessary part of everyday life. Hope gets many of us out of bed in the morning and keeps us going throughout the day.

Even if you have advanced cancer, you can still have hopes and dreams, even though some of these may have changed since you learned about the cancer. Now your hope may be to have a pain-free day. Another hope could be to do something special with a family member. Just sharing and talking openly can be a hope for people with cancer and their families. There may also be real hope for relief of symptoms and slowing down the growth of the cancer. And hope to make the most of whatever time you have left.

Managing pain and discomfort

Advanced illness can cause pain and other discomforts, like breathing problems or swelling. It can be hard to deal with these symptoms. Physical pain causes distress to the mind, too. Work with your health care team to manage your physical symptoms. Severe physical symptoms like pain can make it impossible to have any quality of life. But good medical treatment and some easy-to-learn coping skills can help you manage your physical symptoms best.

Use your pain medicines: Be sure you understand how and when to use the pain drugs your doctor gives you. You can get a lot more information on pain control and the different drugs that may be used in our booklet, Pain Control: A Guide for Those With Cancer and Their Loved Ones.

Get information: Knowing why you have a problem and what you can do about it can relieve stress. Don’t be afraid to ask why something is happening.

Take action: Doing something, sometimes anything, about a problem can help you feel more in control. For example, if the new drug you are taking for your stomach isn’t helping, ask to try something else.

Distract yourself: Getting your mind off the pain is always a good idea. When you are focused on your pain it usually hurts more. If you are watching an interesting movie while in pain and waiting for the pain medicine to work, you may even forget about it for a while. Visits from friends and family can serve the same purpose.

Take it one step at a time: It’s easy to get overwhelmed if you focus on all the discomforts at once. Tackling one problem at a time makes it seem more possible that all the problems can be helped.

Talk with others: Sometimes, it’s a relief just to talk about how discouraged and frustrated you feel about your symptoms. Many people are good listeners and can listen without passing judgment or giving advice.

Express yourself in other ways: For some, talking is not easy. Writing in a journal, painting, or meditating may be other ways for you to express your feelings.

Find your sense of humor: Humor is a tried and true coping skill for rough times. Even when life seems bleak, there is usually something that can lighten the mood and relieve stress.

Practice meditation: By focusing your mind on pleasant scenes you can direct your attention away from unpleasant feeling and thoughts. These mini-vacations may allow you to get a needed rest, both physically and emotionally.

Relieving depression

Feeling sad and down at times is normal with cancer and the side effects of treatment. But there is room for happiness even with advanced cancer. You don’t have to feel down all the time. Depression can be a very serious problem, but it can be treated. Talk to your doctor if you feel down or depressed. A trained mental health professional may be able to help you feel better -- no matter what is causing you to feel depressed.

About 1 in 4 people with cancer will become clinically depressed. And these numbers are higher in those with advanced cancer. Clinical depression can cause great distress and medical care is needed. Most depression can be treated. The symptoms of depression are listed below. Family and friends should watch out for these symptoms. They can encourage the cancer patient to get help.

Symptoms of clinical depression include:

• ongoing sad or "empty" mood
• feeling hopeless and helpless
• no interest or pleasure in everyday things
• less energy, feeling tired, being "slowed down"
• trouble sleeping, early waking, or oversleeping
• loss of appetite or overeating
• trouble focusing, remembering, or making decisions
• feeling guilty, worthless, or helpless
• grouchiness
• crying a lot
• thoughts of suicide; trying to kill yourself

Please see a mental health professional if you have 5 or more of these symptoms for 2 weeks or longer.

Treatment for depression

• medicine
• teaching problem-solving skills
• counseling
• social activities

People treated for depression are often surprised at how much better they feel. Depression and feelings of sadness can become a way of life. It doesn’t have to be that way.

You can get more information on this in our document Anxiety, Fear and Depression.

Feeling less alone

Depression and feeling alone often go hand in hand. Depression can make you feel the need to withdraw from others. But the illness and the demands of treatment sometimes cause you to be alone. People with cancer can end up alone even if they want to be with others. This can happen because of physical problems, lack of transportation, or treatment schedules.

You may feel alone even when you are with well-meaning friends and family. You may have a hard time sharing your feelings about your cancer. Others might be uncomfortable hearing about your illness. This isolation within the company of others can sometimes feel worse than if nobody was there.

Sometimes a person with cancer feels like they need to ask permission from others to talk more freely. It is also helpful if a friend or family member arranges for others to visit you. Trying to do things outside the home can also make you feel less alone.

Managing feelings of guilt

Both people with cancer and those in their support circle often have feelings of guilt. If you have cancer, you might feel guilty about being ill. These feelings can last even when you know it isn’t your fault. Making others aware of your discomfort or telling loved ones that you need their help can make you feel guilty, too.

For the people caring for the patient, guilt feelings can be a daily struggle. Those who are healthy feel guilty about their good health. They often feel bad about not doing enough for their loved one. Sometimes they even feel bad about the resentment that the feel for what they are doing.

• Sometimes just talking about the feelings of guilt can help. It can clear the air and ease everyone’s conscience. Sharing this common feeling can bring you closer together.

• Letting each other off the hook is helpful. You can tell each other that you know everyone is doing their best.

• For caregivers, sharing the work is important. Friends and family who want to help should be given specific tasks to lighten the main caregiver’s load.

• If the guilty feelings won't go away, you might need help working through them. Talk to your doctor about meeting with a trained mental health professional who can help you better understand and manage your feelings.

Facing family issues

Advanced cancer changes the way family members relate to one another. Families that are able to solve conflict well and family members that support each other do best in dealing with a loved one’s cancer. Families who found problem solving hard to do in the past are likely to have more trouble dealing with this stressful situation. You may want to meet with a counselor and work together to plan how to best support each other and anticipate problems.

Roles within the family will change, too. How family members take on new tasks and fill in for the person with cancer affects how they will adjust to losing that person.

For the person with cancer, the changes in family roles can trigger the grief that comes with loss. For example, a woman who is too sick to get out of bed may feel the loss of her role as a wife and mother. Understanding this and finding ways for her to still be involved in her family's day-to-day life may help both her and her family.

Maintaining sexual feelings and closeness

During advanced illness, a sexual relationship will change. This can be due to physical symptoms, such as fatigue, trouble moving, or pain. It can also come from holding back emotions. In most cases sexual desire may decrease, but this does not mean that the need for physical closeness and touching will change. In fact, the need to be held and touched may increase. Talking about feelings and continuing to touch each other can help with feelings of isolation. Still, if you have any doubt about whether it is OK to act in a sexual manner or to simply touch, just ask and talk about it. Never ever assume.

For more information, please see our separate booklets, Sexuality for the Man with Cancer and Sexuality for the Woman with Cancer.

Getting through a long illness

Illness that goes on for months or even years puts huge stress on the family. The longer the stress lasts, the more at risk the family is for mental distress. Family members may become exhausted in body and mind. Fatigue added to worry and fear can take a toll. Find ways to get support for the caregivers. Keep asking how everyone is holding up.

You can get more information on taking care of the caregiver in our document, Caregiving: How to Care for A Loved One With Cancer -- and Yourself.

Finding strength in the spiritual

Spiritual questions are common as a person tries to make sense of both the illness and his or her life. This may be true not only for the person with cancer, but for loved ones, too.

Here are some suggestions for people who may find comfort in spiritual support:

• Help from a spiritual counselor can be timely. He or she can help you find comforting answers to hard questions.

• Religious practices, such as forgiveness or confession, may be reassuring and bring you a sense of peace.

• A search for the meaning of suffering can lead to spiritual answers that can be comforting.

• Belief in life after death and an end to human suffering on earth is helpful for many people.

• Strength through spiritual support and a community of people who are there to help can be priceless to the patient and family members.

Facing death

Anyone with advanced cancer faces the reality that he or she will die. Family members must recognize this too. Even if the person with cancer is doing well, death is a likely part of the near future. Thinking about death is frightening and painful for many people. Patients and families often worry about suffering before death and being alone in death. But there are times when the illness and suffering have gone on for so long that everyone sees death as a relief.

Many people with cancer want to be at home until the end. Dealing with a long illness and dying at home can be easier with the support of family and medical staff.

The main goal for a death that cannot be avoided is that it be a "good death." A good death is defined as one with the least possible amount of pain, discomfort, or suffering for the patient, and the least possible suffering for the family and caregivers. A good death is one that is in line with the patient's and loved ones' wishes, including their culture, values, and ethics. Loved ones are also supported and are with the patient as much as they and the patient like, especially as death nears. Ideally, this allows goodbyes to be said and problems resolved before death. It also allows loved ones to be with the patient at the end.

Our document, Nearing the End of Life, has been written to address questions that patients and loved ones ask about what to expect during the last 6 months of life. You can get a copy by calling our toll-free number or visiting our Web site.

Last Medical Review: 01/28/2009
Last Revised: 01/28/2009