Long-Term Follow-Up After Childhood Cancer

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After you finish your treatment for cancer, you will begin what is called long-term follow-up. The goal of long-term follow-up is to help you stay as healthy as possible and do well in school or work.

What Is Long-Term Follow-Up?

Many childhood cancer programs have long-term follow-up clinics. These clinics screen survivors for health problems that can arise as a result of their cancer treatments. These problems are called “late effects.” In long-term follow-up you will also learn how to lower your risk for these potential health problems.

Call your local cancer center to find out if they have a long-term follow-up program in which you can take part. You can also receive long-term follow-up care from a healthcare provider working in partnership with your treatment center.

Most survivors have long-term follow-up visits about once a year. During these visits, you’ll talk about your progress and your doctor will check for any late effects of treatment. Few survivors have serious late effects. But it’s important to check for them so they can be caught early if they occur.

What Late Effects Could Occur?

Some of the more common late effects of cancer treatment include these:

  • Slow or stunted growth
  • Heart problems
  • Delayed puberty, infertility, or early menopause
  • Low thyroid levels
  • Second cancers
  • Problems with school or work

Your long-term follow-up care providers will recommend tests to check for these and other problems based on the cancer you had and the treatment you received.

What Information Should I Have About My Cancer?

It’s important for you and your healthcare providers to know the details of your cancer and its treatment. To this end, ask your treatment center or hospital to send copies of your treatment records to all of your healthcare providers. Also, ask for a summary of the cancer treatment that you received. This summary, known as a Summary of Cancer Treatment, should contain the following information:

Disease Information

  • Name of the disease you had, the date you were diagnosed, and the site or stage of the disease
  • Dates and descriptions of any relapses
  • Name, address, and phone number of hospitals or clinics where you had your care
  • Name, address, and phone number of your oncologist and other health team members responsible for your care
  • Date your cancer treatment was completed

Chemotherapy Treatment Information

  • Names and doses of all the chemotherapy medicines you received and how they were given
  • Specific information about these chemotherapy drugs:
    • Anthracyclines – total doses
    • Cytarabine and methotrexate – how given and at a high or standard doses
    • Carboplatin – was dose myeloablative

Radiation Therapy Information

  • Parts of body that received radiation
  • Total radiation dose to each field

Other Treatment Information

  • Names and dates of any surgeries you had
  • Whether you received a hematopoietic cell transplant and if you developed chronic Graft-Versus-Host-Disease
  • Names of any other cancer treatments that you received, such as radioiodine therapy or bioimmunotherapy
  • Names and dates of significant complications and treatments for them

Make a copy of your cancer treatment summary for yourself and give copies to each of your healthcare providers. Don’t forget about your dentist, psychologist, and any other providers who care for you. They’ll want to have this information, too.

Do I Also Need a Primary Care Doctor?

Long-term follow-up programs are not designed to meet your everyday healthcare needs. That’s why you need a local healthcare provider to call or visit if you are hurt or sick. Make an appointment with this doctor for a general check-up and to talk about your medical history and health risks. It’s best to have this visit when you are well, not when you are being seen for an illness. If at any point you have a health problem related to your cancer or treatment, your doctor can discuss it with your long-term follow-up team.

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