Transition to Adult Follow-Up After Childhood Cancer

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."

St. Jude describes the usual pediatric path. Follow-up with the treating oncology team runs about two to five years, depending on the center and the diagnosis. After that, care shifts to a long-term follow-up or survivorship program. Somewhere in the late teens or twenties, that program hands off again, this time to adult medicine.

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 the oncology team supplies it, and the survivor should share it with the primary care doctor and every other clinician they see.

Two details matter. Radiation dose and field must be written down, because screening advice turns on them. So must the total dose of each chemotherapy drug, not just its name. "Had doxorubicin" and "had 300 mg per square meter of doxorubicin" lead to different follow-up.

Ask for a copy in your own hands, digital and paper. St. Jude also advises keeping immunization records, since some survivors need vaccines repeated after treatment.

The Children's Oncology Group publishes the Long-Term Follow-Up Guidelines, now in version 6. They are organized by exposure. You look up what a survivor actually received, and the guideline gives the recommended screening and the reason behind it. Sections cover anthracyclines and heart damage, radiation to the chest and later breast cancer, alkylating agents and reproductive effects, and radiation near the pituitary and growth hormone problems.

Passport for Care, run with COG, does this lookup for you. A survivor or clinician enters the treatment history, and the tool returns the likely late effects, the recommended screening schedule, and matching Health Links, which are the plain-language handouts that go with the guidelines.

Bring the printout to the adult clinician. Most internists and family doctors see very few childhood cancer survivors and will not have these guidelines memorized. Handing over a specific list is more useful than describing your history.

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 communication; 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 years after treatment. Cisplatin, high-dose carboplatin, and high-dose brain radiation can cause hearing loss or ringing in the ears months or years later. Radiation to the head or neck can damage the thyroid. Radiation to the pelvis can damage the ovaries or testes and lead to early menopause or infertility. Cancer treatment can also cause a new, different cancer many years later.

None of that is visible in a routine physical. A 27-year-old with mild breathlessness on stairs gets treated as out of shape unless someone knows about the anthracyclines.

So say the sentence yourself at every new visit: "I was treated for cancer as a child. I had these drugs and this radiation, and my follow-up guidelines say I need these tests."

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 while you still have coverage, and get any big screening test done before the change.

• Ages 12 to 14. The teen starts hearing the treatment history directly, not just overhearing it. Let them answer one question at each visit.
• Ages 15 to 17. The teen learns to name their diagnosis, their drugs, and their required screening tests without help. Book part of each visit without a parent in the room.
• Age 18. The teen becomes the legal decision maker and now controls medical records. Confirm they hold their own copy of the treatment summary.
• Ages 18 to 21. Identify the receiving adult clinician by name. Send the treatment summary and screening list ahead of the first visit.
• By age 25. Settle insurance for the year the survivor turns 26.

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

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

Call 911 for chest pain, fainting, or sudden severe breathlessness. These need an ambulance, not a drive to the hospital, and the crew can start treatment on the way.

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
• Survivorship and Long-Term Follow-Up Guidelines, Children's Oncology Group
• COG Long-Term Follow-Up Guidelines, Version 6 (PDF)
• Passport for Care, Children's Oncology Group
• Transition Off Childhood Cancer Treatment, Together by St. Jude
• Heart Failure, MedlinePlus, National Library of Medicine
• Health Coverage for Children Under 26, HealthCare.gov