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CCI (formerly ICCCPO) works to build a world-wide community of childhood cancer organizations representing families of children with cancer and childhood cancer survivor groups. We share information and experience in order to improve access to the best possible treatment and care for children with cancer everywhere in the world. Complete the form to learn more.

W​hat is follow-up cancer care, and why is it important?

Follow-up cancer care involves regular medical checkups that include a review of a patient’s medical history and a physical exam. Follow-up care may include imaging procedures (methods of producing pictures of areas inside the body), endoscopy (the use of a thin, lighted tube to examine the inside of the body), blood work, and other lab tests.

Follow-up care is important because it helps to identify changes in health. The purpose of follow-up care is to check for recurrence (the return of cancer in the primary site) or metastasis (the spread of cancer to another part of the body). Follow-up care visits are also important to help in the prevention or early detection of other types of cancer, address ongoing problems due to cancer or its treatment, and check for physical and psychosocialeffects that may develop months to years after treatment ends. All cancer survivors should have follow-up care.

What should patients tell their doctor during follow-up visits?
During each visit, patients should tell their doctor about:
  • Any symptoms that they think may be a sign that their cancer has returned
  • Any pain that bothers them
  • Any physical problems that interfere with daily life or are bothersome, such as fatigue; difficulty with bladder, bowel, or sexual function; difficulty concentrating; memory changes; trouble sleeping; and weight gain or loss
  • Any medicines, vitamins, or herbs they are taking and any other treatments they are using
  • Any emotional problems they are experiencing, such as anxiety or depression
  • Any changes in their family medical history, including any new cancers

It is important to note that cancer recurrences are not always detected during follow-up visits. Many times, recurrences are suspected or found by patients themselves between scheduled checkups. It is important for patients to be aware of changes in their health and report any problems to their doctor. The doctor can determine whether the problems are related to the cancer, the treatment the patient received, or an unrelated health issue.

For children and adolescents, the Association of Cancer Online Resources, a cancer information system that offers access to electronic mailing lists and websites, provides a list of long-term follow-up care clinics on its Ped-Onc Resource Center page.

What should patients talk to their doctor about once cancer treatment ends?

Every cancer survivor should request a comprehensive care summary and follow-up plan from their doctor once they complete their treatment. Patients should ask their doctor the following questions once cancer treatment ends. The answers can help inform the patient about their care and what to expect next.

  • What treatments and drugs have I been given?
  • How often should I have a routine visit?
  • Which doctor should I see for my follow-up cancer care?
  • What are the chances that my cancer will come back or that I will get another type of cancer?
  • What follow-up tests, if any, should I have?
  • How often will I need these tests?
  • What symptoms should I watch for?
  • If I develop any of these symptoms, whom should I call?
  • What are the common long-term and late effects of the treatment I received?
  • What should I do to maintain my health and well-being?
  • Will I have trouble getting health insurance or keeping a job because of my cancer?
  • Are there support groups I can turn to?

Many patients find it helpful to write these questions down and take notes or tape record their discussions with the doctor to refer to at a later time.

What kinds of medical information should patients keep?

It is important for people to keep a copy of their cancer treatment records. Ideally, this should include a comprehensive care summary and follow-up plan from your doctor. Patients may not always see the same doctor for their follow-up care, so having this information available to share with another doctor can be helpful. In particular, it is important to keep the following information:

  • Results of any diagnostic test
  • Specific type of cancer (diagnosis)
  • Date(s) of cancer diagnosis
  • Details of all cancer treatment, including the places and dates where treatment was received (for example, type and dates of all surgeries; names and doses of all drugs; sites and total amounts of radiation therapy)
  • Contact information for all doctors and other health professionals involved in treatment and follow-up care
  • Side effects and complications that occurred during and after treatment
  • Supportive care received (for example, pain or nausea medication, emotional support, and nutritional supplements)
  • Identifying number and title of clinical trial (research study), if the patient participated in a clinical trial
What other services may be useful during follow-up care?

Other services that may be helpful not just during cancer treatment but also as part of follow-up care include support groups, couples counseling, genetic counseling, fertility/sexual counseling, home care services, nutrition counseling, physical therapy, pain management, and occupational or vocational therapy. Some patients may also need financial aid or assistance with transportation to and from appointments. Information about these and other services is available from local and national cancer organizations, hospitals, local churches or synagogues, the YMCA or YWCA, and local or county government agencies. Patients can also ask their doctor, nurse, or social worker how to find these services.

To get the most from these services, it is important to think about what questions to ask before calling. Many people find it helpful to write down their questions and to take notes during the conversation. It is also important to find out about eligibility requirements for these services. Organizations providing many of these services are listed in the “Resources” section of the NCI publication Facing Forward: Life After Cancer Treatment.

The Children’s Oncology Group (COG) is an NCI-supported clinical trials cooperative group devoted exclusively to childhood and adolescent cancer research. Clinical trials are conducted in the United States, Mexico, Canada, Europe, Australia, and New Zealand. COG developed a resource for health care providers called Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers

The National Comprehensive Cancer Network (NCCN) is a nonprofit organization that is an alliance of cancer centers. The NCCN has a consumer website called This website includes information about follow-up care for cancer, particularly guidance on making formal survivorship plans on its Taking Charge of Follow-up Care.

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