The Importance of Follow-Up Care

Approved by the Cancer.Net Editorial Board, 04/2018

Care for people with cancer does not end when active treatment does. After cancer treatment ends, you will continue to see your health care team. They will look to see if the cancer has come back, manage any side effects, and monitor your overall health.

Developing a follow-up care plan

You and your health care team will work together to develop a personalized follow-up care plan. This plan will serve as a guide for monitoring your health for the months and years that follow. Your care plan may include regular physical examinations and medical tests. This plan is usually based on medical guidelines for a specific diagnosis. Your doctor will also consider your individual needs and preferences.

Participating in follow-up care helps many survivors feel in control as they transition back into their everyday lives. Keeping a medical support system in place is essential for maintaining physical and emotional health.

Watching for recurrence

One goal of follow-up care is checking for a recurrence. Recurrent cancer is cancer that has come back after treatment. Cancer recurs because small areas of cancer cells may remain undetected in the body. These cells may increase in number until they show up on test results or cause signs or symptoms.

The chance that a cancer will recur depends on the type of cancer you were originally diagnosed with. The type of cancer also affects the most likely timing and location of a recurrence. Unfortunately, it is impossible for doctors to predict who will experience a recurrence. But a doctor familiar with your medical history can give you more personalized information about your risk of recurrence. He or she can also suggest ways to minimize this risk.

During follow-up visits, your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests as part of regular follow-up care. Testing recommendations depend on several factors:

  • The type and stage of cancer originally diagnosed

  • The types of treatment given

  • Whether there is medical evidence to show that a test improves a person’s health or extends a person’s life

Your doctor may also tell you to watch for specific signs or symptoms of recurrence. Learn more about cancer recurrence.

Managing long-term and late side effects

Most people expect to experience side effects while receiving treatment. But it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years after cancer treatment ends. Long-term and late effects can include physical and emotional changes.

Talk with your doctor about your risk of developing long-term side effects. This risk will depend on the type of cancer, your treatment plan, and your overall health. If you had a treatment known to cause specific late effects, your doctor may recommend certain tests. Examples of these tests include:

  • Yearly thyroid examinations for people who had radiation therapy to the head, neck, or throat.

  • Lung function tests for people who received bleomycin (Blenoxane) or a bone marrow/stem cell transplant. These show how much air your lungs can hold and how quickly air moves in and out of your lungs.

  • Regular electrocardiograms (EKGs) for people who received radiation therapy to the chest and/or received high doses of a class of drugs called anthracyclines. Anthracyclines include doxorubicin (Adriamycin) or other chemotherapy known to affect heart functioning.

  • Regular mammography starting at an early age for women who had radiation therapy to the chest while they were young.

  • Periodic imaging tests, such as x-rays or computed tomography (CT) scans, or blood tests to watch for a second cancer.

It is important to talk with your doctor about appropriate tests based on your cancer history. Learn more about the most common side effects of cancer treatments and ways to manage them.

Where to receive follow-up care

Some survivors continue to see their oncologist, while others see their family doctor or another health care professional. This decision depends on several factors, including:

  • The type and stage of the cancer

  • Treatment side effects

  • Health insurance rules

  • Personal preferences

Survivors may find it confusing to know which doctor to see. It may help to talk with other survivors in your area to find out how they manage this aspect of care.

Keeping personal health records

Information about your diagnosis and treatment plan is valuable to all doctors who will care for you throughout your lifetime. Many survivors fill out a cancer treatment summary with the help of a member of their health care team. ASCO offers forms to keep track of the cancer treatment you received and your doctor's recommendations for follow-up care.

Information about your treatment plan and follow-up care recommendations are especially important to your primary care doctor. Your primary care doctor may not have been involved in many parts of your cancer treatment. These forms will help him or her oversee your follow-up care and make sure your health is on track. It is also helpful to have this information in your health records if you change doctors in the future.

A treatment summary usually includes:

  • Date of diagnosis

  • The type of cancer, including tissue/cell type, stage, and grade (if known)

  • Dates of treatment and a list of treatments received, including the type of treatment, dose of drug or radiation therapy, and number of treatment cycles

  • Any related medical findings during the course of treatment, such as the side effects you experienced and how they were managed

  • The results of any diagnostic tests

  • A schedule of tests needed to evaluate your health after cancer treatment

  • Risks for developing long-term side effects of cancer treatment

Questions to ask your health care team

Consider asking your health care team these questions about your follow-up care:

  • What is the risk of the cancer returning? Are there signs and symptoms I should watch for?

  • What should I do if I notice one of these symptoms?

  • What long-term side effects or late effects are possible based on the cancer treatment I received?

  • Who will be coordinating my follow-up care? Does he or she have experience with cancer survivors?

  • How often should I return for a follow-up visit?

  • What tests will I need when I go for my follow-up visits?

  • What screening tests do you recommend based on the treatments I had?

  • How long will I need to continue getting screening tests?

  • Do I need to take any special medications or follow a special diet?

  • Do I need to be referred to a specialist?

  • What can I do to lower my risk of the cancer coming back or developing a second cancer?

  • How can I get a treatment summary and survivorship care plan to keep in my personal records?

  • What survivorship support services are available to me? To my family?

Related Resources

Why Cancer Survivors Should Have a Written Survivorship Care Plan

Coping with Fear of Recurrence

3 Tips for Transitioning Out of Cancer Treatment

Extended Treatment and the Needs of Cancer Survivors

ASCO Cancer Treatment and Survivorship Care Plans

Additional Resources

Children’s Oncology Group: Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers

National Cancer Institute: Follow-Up Medical Care

National Coalition for Cancer Survivorship: Living Beyond Cancer

ASCO Answers Cancer Survivorship; Trusted Information to Help Manage Your Care From the American Society of Clinical Oncology; Cancer.Net ® Doctor-Approved Patient Information from ASCO ® The ASCO Answers Guide to Cancer Survivorship offers questions to ask your health care team, as well as space to write down the answers and make other notes. It also includes a blank treatment summary and survivorship care form to keep track of test results, procedures, and treatments, as well as recommendations for follow-up care.  Download the Guide for free as a printable pdf in English (44 pages) or in Spanish (48 pages), or order printed copies of the booklet from the ASCO Store.