Living with Cancer While Receiving Long-Term Treatment

Approved by the Cancer.Net Editorial Board, 08/2022

Sometimes, cancer treatment can go on for an extended period of time. Many people receive cancer treatment for months, years, or even the rest of their lives.

There are two goals for cancer treatment, also called cancer therapy: eliminate the cancer or control the cancer's growth. When cancer therapies are used to eliminate the cancer, they are called "curative cancer treatments." Cancer therapies that are used to control cancer growth are called "palliative cancer treatments." Both curative cancer treatments and palliative cancer treatments can include long-term or extended therapies.

For long-term treatments that last months or years to control cancer, cancer may be treated like a chronic illness. Similar to the approach with such chronic illnesses as multiple sclerosis or type 1 diabetes, the goal of long-term treatment is to help patients live as well as possible for as long as possible.

Long-term treatments can include surgery, radiation therapy, and systemic therapies like chemotherapy, targeted therapy, hormone therapy, and immunotherapy.

When is long-term cancer treatment needed?

Long-term treatment for cancer continues for a extended period of time after an initial cancer diagnosis and your primary treatment. There are different situations and different types of cancer that might benefit from long-term, extended cancer treatment.

To prevent cancer from returning. Some people whose cancer has been cured may need ongoing treatment to keep it from coming back. For example, people with early-stage breast cancer whose disease has been cured using surgery or radiation therapy may receive ongoing hormone therapy to reduce risk of recurrence.

To put cancer in remission and maintain and control cancer progression. With advances in cancer research, some cancers are more likely to be treated chronically, including specific types of leukemia, lymphoma, ovarian cancer, and lung cancer. Doctors may choose a long-term treatment to help stop the disease from growing, spreading, or progressing. This is also called maintenance treatment. For example, people with chronic myelogenous leukemia (CML) often take a medication known as a tyrosine kinase inhibitor for many years.

To manage advanced cancer. Metastatic cancer may be treated over the long term. Metastatic cancer means that the cancer has spread to a different part of the body from where it started. In the past, many people did not live long with metastatic cancer due to the limited effectiveness of available treatments. With advances in research, doctors can now treat some types of metastatic cancer for much longer periods of time, even when the disease cannot be cured.

What kind of long-term treatments are used to treat cancer?

Many types of extended treatment plans use medication, also called systemic therapies. These include:

You may receive the same type of systemic therapy initially used to treat your cancer. Or, a different drug or combination of drugs may be used to treat cancer. Your doctor may also suggest you join a clinical trial for a specific long-term treatment. The type of long-term treatment you receive depends on many different factors, including your cancer type, location, stage, your age, and your general health.

During your treatment period, your cancer may stay the same over time. This means it is controlled. Treatment may be stopped if the cancer is in remission and then restarted if it starts growing again.

It is also possible for the cancer to go through cycles of growing and shrinking. If cancer continues to grow or spread, a different treatment may be recommended. In general, cancer treated in this way may change over time, but it does not go away completely.

How to make decisions about long-term cancer treatment

It is important that you and your doctor talk about the goals of your treatment plan. This includes the medical goals for each treatment and your goals for living your life with cancer. During this conversation, your doctor can tell you if the recommended treatment plan is curative or palliative, and why this plan is recommended for you.

It is also a chance for you to share what is important to you for your treatment. Tell your doctor about what is important to you about living with cancer so they can help you make informed decisions about your medical care. For example, you may want to live as long as possible, even with the cancer and treatment causing symptoms and side effects. Or, your priority may be to experience fewer symptoms and side effects from cancer and its treatment. During this conversation, keep in mind the quality of life you would like to maintain. If your goals change over time, it is important to let your doctor know. These conversations are an important part of "shared decision-making," which means that you and your doctor work together to choose your treatment and care plan.

Your doctor may recommend long-term or life-long treatment to help you live with cancer. If the therapies stop working or they cause side effects, also called toxicity, that are unacceptable to you, your doctor may change the dose or stop the medication. Please share how you are feeling with your health care team.

If the treatment not effective or it needs to be changed because of side effects, it does not mean you or your health care team are giving up. It means that the treatment is not achieving the goal of helping you live as long or as well as possible and a different plan is needed.

Learn more about making cancer care decisions.

Tips for managing cancer while receiving long-term treatment

It can be difficult to manage daily life, physical side effects, and emotions during an extended treatment period for cancer. These tips can help.

  • Develop a survivorship care plan with your doctor. Your survivorship care plan should have information on future checkups and cancer tests. Talk with your doctor regularly about your treatment, including discussing ideas for improving your physical and emotional health.

  • Talk about side effects with your health care team. Discuss what symptoms and side effects are possible, so you can be more prepared if they occur. Also, let your health care team know about side effects you experience, including if they worsen or a new problem starts. They can help manage and relieve side effects.

  • Take your medications as prescribed. Carefully follow the medication instructions provided by your doctor to get the most benefit. Ask any questions you have, such as what to do if you miss a dose.

  • Schedule and get follow-up tests. These medical tests provide valuable information to you and your doctor about if or how your cancer has changed. Staying on track can also help you feel a sense of control and provide reassurance about your health. Plan ahead and think through transportation options to and from each appointment.

  • Explore cancer rehabilitation options. Rehabilitation helps people regain or keep their independence over different aspects of daily living after a cancer diagnosis. Services can include such help as physical therapy, pain management, nutritional planning, and emotional counseling.

  • Make healthy lifestyle changes. Think about what you can do every day to help your body and mind feel stronger. This includes not smoking, avoiding or reducing alcohol intake, eating healthy foods, exercising regularly, getting good sleep, and reducing stress.

  • Ask for financial help. The costs of extended medical treatment can add up. Your health care team can provide referrals to financial resources.

Coping with cancer while receiving long-term treatment

It is normal to feel angry, scared, anxious, or sad about cancer that needs long-term treatment. Talking about your feelings is important, even when treatment works well. Ask your health care team for resources that can help you cope, such as:

Support for caregivers

Family caregivers who are taking care of someone at home during extended cancer treatment can have unique challenges. This can include fatigue, depression, and anxiety. They may also have sleep problems or lack time to take care of their own health. Ask your health care team about ways to help caregivers cope.

Questions to ask the health care team

  • Will I need cancer treatment over the long term? If so, how long?

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

  • What clinical trials are open to me? How do I find out more about them?

  • Which extended treatment do you recommend for me? Why?

  • What side effects can I expect? How can they be managed?

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

  • What follow-up tests will I need?

  • How will we know if extended treatment is working?

  • What can I do at home to support my health?

  • If I need help coping with the emotional toll of cancer, who can I talk with?

  • If I'm worried about managing the costs of this treatment, who can help me?

Related Resources

Extended Treatment and the Needs of Cancer Survivors

6 Things Patients Taught Me About How to Cope with Extended Treatment

Coping with Uncertainty