Living With Chronic Cancer

Aprobado por la Junta Editorial de Cancer.Net, 05/2018

Chronic cancer is cancer that cannot be cured but that ongoing treatment, also called extended treatment, can control for months or years. As with other chronic diseases, such as multiple sclerosis or type 1 diabetes, the goal of extended treatment for cancer is to help patients live as well as possible for as long as possible. While living with cancer indefinitely is not easy, your health care team can help you manage the challenges of survivorship and extended treatment.

Reasons for extended treatment

Extended treatment continues for a long time after an initial cancer diagnosis and primary treatment. People may receive extended treatment to:

  • Control a cancer. Some types of cancer are more likely to become chronic, including leukemia, lymphoma, ovarian cancer, and breast cancer. Extended treatment may help prevent the disease from growing, spreading, or progressing. This is sometimes called maintenance treatment. For example, people with chronic myelogenous leukemia (CML) often take a medication known as a tyrosine kinase inhibitor daily for many years.

  • Manage advanced cancer. Metastatic cancer, which means that the cancer has spread to a different part of the body from where it started, can also become chronic. In the past, many people did not live long with metastatic cancer. Today, doctors can often treat it for an extended period even if they cannot cure it.

  • Prevent cancer from returning. Some people whose cancer has been cured may need extended treatment to keep it from coming back. For example, women with early-stage breast cancer whose disease has been cured using surgery or radiation therapy may receive ongoing hormone therapy.

Treatment for chronic cancer

Chemotherapy, the use of drugs to destroy cancer cells, is often recommended for chronic cancers. You may receive the same drug or drugs that were initially used to treat the disease. Or you may receive a new drug or combination of drugs. Many types of chemotherapy can now be taken as a prescription pill by mouth instead of intravenously, through a vein, at a doctor’s office or hospital.

Other extended treatment options may include immunotherapy, targeted therapy, radiation therapy, or hormone therapy. Your doctor may also suggest a clinical trial that is studying an extended treatment. Learn more about the different cancer treatments.

The type of extended treatment you receive depends on:

  • The type of cancer

  • Where the cancer is located

  • The amount of cancer

  • How far the cancer has spread

  • Available treatment options

  • The treatments you had before

  • Your age

  • Your general health

  • Your personal preferences

Your cancer might stay the same over time and not change during extended treatment. This means it is controlled. Treatment may be stopped if the cancer is in remission and continued if it starts growing again.

It is also possible for the cancer to go through cycles of growing, shrinking, or seemingly disappearing. If cancer continues to grow or spread, a different treatment may be recommended. It is important to remember that while chronic cancer can change, it will not go away completely.

How long will extended treatment continue?

There is no specific timeline for extended treatment of chronic cancer. Factors that you and your health care team may consider include:

  • The type of cancer you have

  • The type of treatment and treatment plan recommended

  • How well the cancer is being controlled by the treatment

  • How the treatment makes you feel physically and emotionally

  • How advanced or aggressive the cancer is

  • Your age

  • Your overall health

Making decisions about chronic cancer

Sometimes treatment can no longer control a cancer. If you choose to stop treatment, this does not mean you or your health care team have given up. Instead, your care is focused on relieving symptoms and allowing for additional support in all areas of your life. This is called palliative care or supportive care.

It may be helpful to think about your treatment goals before making decisions about extended treatment. These may include:

  • Living longer, even with cancer

  • Having fewer symptoms from cancer

  • Having fewer side effects from the treatment

  • Maintaining your physical and emotional abilities

  • Having a certain quality of life

Your family and friends might have different ideas about your treatment. They might want you to have more aggressive treatment. Or they might try to keep you from having certain treatments. If this happens, talk to your health care team. They can help you talk with your loved ones, if you want them to.

Tips for managing chronic cancer

Living with chronic cancer can be difficult. These tips can help you better manage the disease and maintain a good quality of life.

  • Develop a survivorship care plan with your doctor. Your survivorship care plan should contain information on future checkups and cancer tests, potential side effects of the treatment you are receiving, and ideas for improving your health.

  • Talk with your health care team about managing cancer and cancer treatment side effects. Your team can find the best ways to manage and treat the side effects you experience.

  • Learn how to manage your medication. Carefully following the medication instructions provided by your doctor will help you get the most benefit from each drug.

  • Have recommended follow-up tests. These medical tests let you know if and how your cancer has changed.

  • Explore rehabilitation options. Rehabilitation could include a wide range of services, such as physical therapy, pain management, nutritional planning, and emotional counseling, that can keep you as independent and productive as possible.

  • Make healthy lifestyle changes. Follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, managing stress, and staying physically active.

  • Ask about financial resources. The costs of extended medical treatment can add up. Your oncology team can provide referrals to financial resources.

Coping with chronic cancer

Having chronic cancer can make you feel angry, scared, anxious, or sad. Talking about your concerns is important, even when treatment is working well. Ask your health care team for resources that can help you cope. Options may include:

Support for caregivers

When treatment lasts for many months or longer, your caregivers can become focused on providing physical, emotional, and practical care. As a result, they may experience symptoms such as fatigue, sleep problems, depression, and anxiety. Your health care team can also suggest ways to help caregivers cope.

Questions to ask your health care team

Regular and open communication with your health care team is important when you have chronic cancer. Consider asking them the following questions:

  • What are my extended treatment options? What is the goal of each treatment?

  • What extended treatment plan do you recommend? Why?

  • What clinical trials are open to me? Where are they located, and how do I find out more about them?

  • How long do you think I can live with extended treatment?

  • What side effects are possible based on the cancer treatment I receive?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • Who will coordinate my follow-up care? Does he or she have experience with chronic cancer?

  • How long will I continue to receive extended treatment?

  • How long do you think extended treatment can help me live?

  • What specialists will I need to see?

  • What follow-up tests will I need? How often will I need them?

  • How will I know if the extended treatment is working or if the cancer is getting worse?

  • If I’m worried about managing the costs of long-term cancer care, who can help me?

  • Where can I find emotional support for me and my family?

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