Transition to Adult Follow-Up After Childhood Cancer

This page is for childhood cancer survivors and their families getting ready to move from pediatric to adult follow-up care. It covers the treatment summary, late effects, care models, insurance, and symptoms to report.

Moving to adult follow-up is not the end of cancer care. It is a change in who holds the file.

For years, one pediatric team knew everything. They knew which drugs were given, how the child reacted, and what to watch. In adult care that memory is gone on day one. The new clinician sees a healthy-looking adult with a vague line in the chart that says "childhood leukemia."

Ask your pediatric team how and when your care will move to a long-term follow-up or adult program.

The goal of a good handoff is simple. The next doctor should be able to answer one question without guessing: what was this person exposed to, and what does that mean I should screen for?

That question is answered by a treatment summary. NCI lists what belongs in one:

• The date of diagnosis and the exact cancer type.
• Pathology reports giving the type and stage in detail.
• Every surgery.
• The sites of radiation and the total dose to each site.
• The names and doses of every chemotherapy drug.
• Key lab, x-ray, CT, and MRI reports.
• Complications during treatment.
• Supportive care given, including medicines and emotional support.
• Long-term effects to watch for.
• Contact details for the treating providers.

The treatment summary sits inside a survivorship care plan, which adds the schedule of what to check and when. NCI says your oncologist should provide the written summary. Share it with the doctors who care for you.

NCI says the summary should list radiation sites and doses and the names and doses of chemotherapy drugs. Ask that the doses be written down, not just the drug names.

Ask for a copy in your own hands, digital and paper.

Screening depends on what treatment you received. NCI's late effects information gives examples:

• Anthracycline chemotherapy (such as doxorubicin or daunorubicin) raises the risk of heart and blood vessel problems.
• High-dose radiation to the chest raises the risk of breast cancer in childhood cancer survivors.
• Radiation to the pelvis may damage the ovaries or testes.

Ask your survivorship clinic which tests your treatments call for, how often, and who will order them. Bring a written list to the adult clinician.

NCI's Office of Cancer Survivorship describes several models. Knowing the names helps you ask for one.

• Oncology-led care keeps the cancer specialist in charge.
• Primary care-led care puts the family doctor or internist in the lead.
• A multidisciplinary survivorship clinic brings several specialists together in one place.
• Shared care splits the work between oncology and primary care, with agreed ways to communicate. NCI's Office of Cancer Survivorship notes that many have identified it as the optimal model.

NCI also points to risk-stratified care. Survivors are sorted into different pathways based on how complex their needs are. Someone treated with surgery alone needs a lighter plan than someone who had a transplant with total body irradiation.

Ask the pediatric team which model your area supports, and ask for a named receiving clinician rather than a general referral.

NCI's list of late effects explains why the history matters so much. Certain chemotherapy drugs and chest radiation can cause congestive heart failure or coronary artery disease. Cisplatin, high-dose carboplatin, and high-dose brain radiation can cause hearing loss or ringing in the ears. Radiation to the pelvis can damage the ovaries or testes and lead to early menopause or infertility. NCI says cancer treatment can sometimes cause a new cancer many years after treatment ends.

A new doctor may not know about these risks unless you tell them.

So say the sentence yourself at every new visit: "I was treated for cancer as a child. I had these drugs and this radiation. What tests do I need?"

Coverage gaps are how survivors fall out of follow-up. Under federal rules, a young adult can usually stay on a parent's health plan until age 26. For Marketplace plans, coverage runs through December 31 of the year the person turns 26, or the age their state allows.

Plan the year before that date, not the month after. Ask the survivorship clinic's social worker to help map options.

• As a teen. Start hearing the treatment history directly. Learn your diagnosis, your drugs and your radiation.
• Before leaving pediatric care. Ask for a named adult clinician, not a general referral. Send the treatment summary and screening list ahead of the first visit.
• Before age 26. Settle insurance for the year you turn 26.

Call a doctor, and mention the cancer history in the first sentence, for any of these:

• Shortness of breath, trouble sleeping flat, or swelling of the legs or abdomen. MedlinePlus lists these among heart failure symptoms, and names cancer radiation and chemotherapy as causes.
• Fatigue or weakness that does not improve after rest.
• A new lump anywhere, especially in a previously irradiated area.
• Any change in the body that lasts longer than a few weeks.

Call your care team or doctor right away, day or night, for new hearing loss or ringing in the ears. Mention that you had cisplatin or carboplatin if you did. For the swelling, breathlessness and other symptoms above, call right away too. If you cannot reach anyone, go to the emergency department.

Call 911 or go to the nearest emergency department for chest pain, fainting, sudden severe breathlessness, substantial bleeding, or sudden confusion. These need an ambulance, not a drive to the hospital.

See Late Effects of Childhood Cancer Treatment for the medical detail and What to Expect at a Survivorship Visit for the appointment itself. Also useful: Your Survivorship Care Team, Keeping Track of Your Medical Records, Talking to Teachers About Childhood Cancer, and Infection Precautions for Children During Cancer Treatment.

• Follow-Up Medical Care, National Cancer Institute
• Late Effects of Cancer Treatment, National Cancer Institute
• Late Effects of Treatment for Childhood Cancer (PDQ), National Cancer Institute
• Cancer Survivorship, National Cancer Institute
• Adolescents and Young Adults with Cancer, National Cancer Institute
• Models of Survivorship Care, NCI Division of Cancer Control and Population Sciences
• Heart Failure, MedlinePlus, National Library of Medicine
• Health Coverage for Children Under 26, HealthCare.gov