Transitioning From Pediatric to Adult Oncology Care

This page is for teens and young adults who were treated for cancer as children and are moving to adult care. It covers what to bring, how follow-up works, insurance at age 26, and taking charge of your own care.

You may have been coming to the same building since you were small. The nurses know how you take bad news. The child life specialist knows what distracts you. Your parents know the parking garage. Then, somewhere between eighteen and twenty-six, the system decides you belong somewhere else.

The grief that comes with this is real, and it is widely reported. Adult clinics are quieter, faster, and built around the assumption that you will manage your own care. Appointments are shorter. Nobody explains things to your mother. It is a change in culture as much as in address.

Planning for it a year or two in advance makes it far less abrupt.

Before you leave pediatric care, ask for a written treatment summary and survivorship care plan. This is the single most valuable thing you can take with you.

The National Cancer Institute says your treatment team should give you a written summary of the treatment you received. Ask that it records your exact diagnosis and the dates of treatment, every chemotherapy drug you received with doses, any radiation, surgeries, stem cell transplant details, and any significant complications. Adult doctors who did not treat you cannot work this out from a scar or a memory. Which late effects you should be checked for, and how often, depends on the treatments you had, so go through this with your pediatric team before you leave.

Keep a copy yourself, on paper and in a file you can email from your phone. Do not assume records will follow you between health systems.

The Children's Oncology Group publishes Long-Term Follow-Up Guidelines for survivors of childhood, adolescent, and young adult cancers. They are risk-based. According to the Children's Oncology Group, recommendations vary with the therapies each person received. Alongside them are Health Links, free patient handouts on many health topics.

Passport for Care is a free online tool that creates a personalized treatment summary, possible late effects and a follow-up plan based on the COG guidelines.

Ask your pediatric team which specific late effects apply to you. Ask at what interval each should be checked. And ask what symptoms mean you should contact someone sooner. Write the answers down. Late effects can appear years after treatment ends, which is exactly why follow-up continues long after you feel well.

In the United States, HealthCare.gov says you can generally join and stay on a parent's job-based plan until you turn 26, even if you get married, start or leave school, live in or out of your parent's home, or are not claimed as a tax dependent. For a Marketplace plan, you can stay covered through December 31 of the year you turn 26. Check with the employer or plan about exact dates.

HealthCare.gov describes a Special Enrollment Period as a time outside Open Enrollment when you can enroll in or change Marketplace plans. Ask a hospital social worker or HealthCare.gov what you qualify for, and look at your options before your coverage ends so you do not have a gap in care.

Ask your pediatric team whether an adult survivorship clinic is available and who they recommend. Bring your treatment summary to the first visit, and be ready to explain it. If your new doctor has not cared for a childhood cancer survivor before, point to the COG guidelines.

Practical skills close the gap. Know your diagnosis and your drug names. Book your own appointments. Refill your own prescriptions. Speak first in the room. Practice these while your pediatric team is still there to catch anything you miss. Most people find the confidence comes gradually, one appointment at a time.

• COG Long-Term Follow-Up Guidelines
• NCI - Follow-Up Medical Care After Cancer Treatment
• HealthCare.gov - Young Adults and Coverage Until 26