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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.
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 childhood cancer center or a cancer center that is near where you live 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.
Some of the more common late effects of cancer treatment include these:
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.
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:
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
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.
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.