Living with Advanced Cancer

There are times when a cancer does not respond to treatment or when a cancer may come back (recur) after treatment. Dealing with advanced or recurrent cancer can be frustrating and discouraging, but there is hope. There is hope to live as long as possible and to continue to do things that have meaning and are important. There is also hope for relieving your cancer symptoms. It is important to know that people can live with advanced cancer.

Treatments such as chemotherapy and radiation can still be useful in controlling the cancer and managing its symptoms. While some people may continue to seek active treatment (treatment aimed at killing the cancer), others may wish to have what is called palliative care. This means seeking care to relieve the symptoms of cancer and to keep the best quality of life for as long as possible. Treatments may be similar to what was done in the past, but the goals of treatment can change.

Your health care team is there to provide support. Keep talking with them about your concerns and any problems you may have. Talk with your family and friends about what you are feeling. Talk about your fears and concerns. Remember, too, that your life is still yours. Although your physical health may be changing, there are ways for you to continue to be in control of your life. There are also ways for you to make sure you will be in control in the final phases of your illness.

What can you do?

Although the health needs of people differ depending on many factors, including the type and location of their cancer, there are some general things a person living with advanced cancer can do to maintain their quality of life.

  1. Talk with family/friends/health care team. Throughout your diagnosis and treatment, you have probably learned that talking with your family, friends, and health care team is very important. Continue to talk to your health care team about concerns you are having. It is natural for a person with advanced cancer to feel many emotions including anger, fear, and sadness.
  2. Just as you may need time to adjust to this new phase of your illness, your family and friends may also need time. If you are having trouble talking with family and friends, ask your nurse, doctor, or counselor to gather everyone together to talk. Talk with a counselor or others about how to deal with these emotions. Ask your health care team about area support groups. Some people find strength in their religion or spiritual beliefs. Consider talking with a member of the clergy.
  3. Manage your symptoms. Your quality of life is better if your symptoms are under control. Talk to your health care team about the best way for you and your caregivers to manage your symptoms.
  4. Be as active as you can. When an illness progresses, it may be harder to do the things you have always done. Talk to your health care team about what, if any, limitations you may have. If your physical health allows, continue to exercise in some enjoyable way. Or, if you find it is too much for you, take up a new hobby or find things that you can still do and enjoy, such as reading, writing, creating a photo album, or making a video for family and friends.
  5. Let friends and family know what they can do to help. What can you do for yourself? What is important to you? What can friends and family do for you? What can all of you do together? Where do you turn if you need extra help or care? If you are not up to being social, let people know this as well.
  6. Make your wishes known. Making the decision to stop active cancer treatments can be a hard choice for a person with cancer and their family. These are personal choices. If you are faced with making these decisions, talk with your family and health care team about your wishes and explore all of your options. Even if you are less physically active, it is important to remember that you are still in control of your life. You are still able to make decisions about your life to the extent that you desire. Talk to your family, friends, and health care team about how active you want to be in making decisions about your care.
  7. Maybe you want to give someone else some of the responsibilities or share decisions about what to do. You may want to create a health care proxy and/or power of attorney. This allows someone who you choose to make health care or other decisions for you. Whatever you choose, you are in control of your life and you know what will work best for you. You may also consider creating a living will or giving specific instructions on what your wishes are if your cancer progresses. This process helps make your end-of-life wishes and desires known to family, friends, and your health care team and can help ensure that your wishes are honored. These wishes may include funeral arrangements or decisions about hospice care. Discuss with your family, friends, and health care team your wishes regarding when your heart stops beating or you stop breathing. You can choose to issue a Do Not Resuscitate order (DNR) if you want.
  8. Decide on the best place for your care. People dealing with advanced cancer have choices for the location of their care—in the home, an outpatient setting or the doctor’s office, in the hospital, or through a hospice. Although a person can live with recurrent or metastatic cancer for a long time, at some point, people with advanced disease will experience a shift where it becomes clear that they are dying. It may be best to discuss these choices prior to this point if you can. Hospice care focuses on improving the quality of life for the remainder of your life and can make the dying process as comfortable and pain-free as possible. Hospice care can be given in the home, the hospital, or in a separate hospice. These are all personal choices based on the your needs and available resources. Your health care team can discuss these options with you and help you get the care you need.
  9. Preparing for the end of life. Many people find this time hard to think about and talk about. Often, family, friends, and health care professionals will wait for the person with cancer to raise any issues or concerns they may have. Talk with your family, friends, and health care team about what you want to happen in the final phases of your illness. Discuss the organization of personal documents and where you keep them so that your family and friends know where they are and what your wishes and desires are. Lawyers, clergy, and counselors may also help you and your family in planning for end-of-life issues.

    10. For more information about quality of life in cancer, click here. (Links user to Quality of Life Topic)