Adolescents Approaching Medical Independence

Somewhere between 15 and 25, care changes hands. A parent stops being the person who knows the drug names, books the scans, and answers the questions. The survivor becomes that person.

This does not happen on a set date. It works best when it is planned in stages over several years.

HIPAA is the federal privacy rule that governs your medical records. It does not set one national age for adulthood. HIPAA defers to state law to determine the age of majority and the rights of parents to act for a child in making health care decisions.

In most states that age is 18. On that birthday, in most places, your parent is no longer your personal representative. The clinic can no longer discuss your results with them by default.

That surprises families every year. If you want a parent to keep talking to the team, you have to sign a form saying so. Ask the clinic for it before the birthday, not after a problem.

The reverse is also true. If you do not want a parent involved in a particular part of your care, that is now your call.

Over 60% of childhood, adolescent, and young adult cancer survivors will experience adverse physical, psychosocial, or behavioral outcomes months or even years after treatment ends.

Those effects include heart damage, hormone problems, fertility problems, second cancers, thinking and memory changes, and financial hardship.

Late effects are found by people who are looking for them. A doctor who does not know you had cancer will not look. That is the whole reason this transition matters.

You need a written treatment summary. Ask for it by name. It should contain:

• The date of diagnosis and the type of cancer.
• Pathology reports describing the type and stage of cancer in detail.
• Dates and types of surgery.
• The sites and total doses of radiation therapy.
• The names and doses of chemotherapy and all other drugs.
• Key laboratory reports, x-ray reports, CT scans, and MRI reports.
• A list of signs and symptoms to watch for, and possible long-term effects.
• Contact details for the health care providers who treated you.
• Any complications or supportive care you received.

Keep it in a binder or folder with your medical records. Keep a photo of it on your phone too. Then keep a record of every medical visit you ever have.

The radiation sites and the chemotherapy doses are the two items most often missing. They are also the two that determine what screening you need for life. Do not accept a summary without them.

Before you take over, you should be able to say, without looking anything up:

• What your cancer was called, and where it was.
• What year you were treated, and where.
• Which chemotherapy drugs you had.
• Whether you had radiation, and to which part of the body.
• Which surgeries you had.
• What you are allergic to.
• What medicines you take now, and at what dose.

Practice saying it in about a minute. You will use it in emergency rooms, at new clinics, and at every dentist for the rest of your life.

Some late effects have specific warning signs. Learn the ones that match your treatment.

If you had anthracyclines or chest radiation, contact a doctor promptly for shortness of breath, dizziness, or swollen hands or feet. Those are the signs of a weakened heart muscle.

If you had chemotherapy or radiation to the chest, report shortness of breath, wheezing, fever, dry cough, congestion, or feeling tired.

Go to the emergency department for chest pain, fainting, or severe breathlessness. Tell them you are a cancer survivor, and name the drugs. It changes what they look for.

Take these on one at a time, not all at once.

Stage one, around 14 to 16. Speak for part of your own appointment. Know your diagnosis and treatment. Start a medication list.

Stage two, around 16 to 18. Book your own appointments. Order your own refills. Fill in your own forms. Know your insurance details.

Stage three, around 18 to 21. Attend at least part of each visit alone. Ask your own questions. Know how to reach the clinic out of hours. Understand what your follow-up schedule is and why.

Parents can help most by stepping back on schedule rather than all at once.

People generally return for follow-up appointments every 3 to 4 months during the first 2 to 3 years after treatment, then once or twice a year after that.

Long-term survivors move to a survivorship or long-term follow-up clinic. Ask which clinic owns your care now, and ask what happens when you age out of pediatric services.

You may see the doctor who treated you, or another provider, or your primary care doctor. Whoever it is, ask both your doctors to send clinic visit notes to each other. Records do not travel by themselves.

In the United States, you can generally join and stay on a parent's job-based plan until you turn 26.

These things do not disqualify you:

• Getting married.
• Having or adopting a child.
• Starting or leaving school.
• Living in or out of your parent's home.
• Not being claimed as a tax dependent.
• Turning down an offer of job-based coverage.

A parent's Marketplace plan works differently. There, coverage runs through December 31 of the year you turn 26. Some states and plans allow longer, so check which type of plan you are on.

Start planning for the switch at 25, not at 26. A gap in coverage is a bad time to need a scan.

Cancer treatment can affect fertility. It is important to talk with your doctor about whether the treatment you had may have caused, or raised the risk of, infertility.

If this was discussed when you were 8, it was discussed with your parents, and possibly not with you. Ask again as an adult. Ask what was done at the time, what was stored if anything, and what testing can tell you now.

Cancer can create a sense of isolation from friends and family, who may not understand what you are going through. As a young person, you may feel like you are losing your independence at a time when you were just starting to gain it.

That is worth saying out loud at a clinic visit. Ask about counseling, and about peer support with other survivors your age.

• Can I have a written treatment summary with radiation sites, doses, and chemotherapy doses?
• Which clinic will follow me after I leave pediatric care, and when does that happen?
• What screening do my specific exposures require, and how often?
• What form do I sign if I want a parent to keep access to my records?
• Who do I call out of hours, and what counts as urgent for someone with my history?

• Follow-Up Medical Care — NCI
• Late Effects of Cancer Treatment — NCI
• Adolescents and Young Adults with Cancer — NCI
• Pediatric and AYA Cancer Survivorship — NCI
• Parents as personal representatives, HIPAA FAQ 2093 — HHS
• Health Coverage for Children Under 26 — HealthCare.gov