Personal Health Checklist for Young Adult Cancer Survivors

Before you turn 18, your parents usually take care of your health care decisions.

But once you are 18, managing your health becomes your responsibility. There are many details to consider, so it can be confusing and overwhelming.

Your parents can stay involved if you want them to. For example, you can talk to them about your choices. There are also resources to help you.

A personal health checklist can help you manage your medical needs.

Personal health checklist

1. Move on from your pediatrician and find a primary health care provider for adults. A primary care provider (PCP) is your main doctor or health care provider. PCPs provide general health care. They can:
   • Do physical examinations
   • Treat common medical problems
   • Prescribe medicines
   • Provide preventive health care
   • Teach you about healthy choices 
   • Refer you to specialists for certain health care needs
   • This provider may be a medical doctor (MD), doctor of osteopathic medicine (DO), nurse practitioner (NP), or physician assistant (PA). They typically work in family practice or internal medicine. When you’re looking through a list of providers, primary care providers may be found in these categories.
2. Find specialists, if necessary. Your care team at your cancer center or your primary care provider can let you know if you need to see a specialist for certain conditions. For example, you may need to see an endocrinologist for hormone problems or a cardiologist for heart problems. If you’re not sure, ask your care team or primary care provider.
3. Learn about your health insurance plan. Your coverage may change after you turn 18. It’s important to know about your health insurance because some providers only take certain insurance plans. Also, most health plans give you the best deal on services when you see a doctor who has a contract with your health plan. While you may be able to see providers who don’t contract with your plan, visiting an “in-network” provider usually means you’ll have lower out-of-pocket costs.
4. Carry a copy of your insurance card.
5. Learn and practice how to make a medical appointment.
6. Learn and practice how to get a prescription filled and manage refills. This may vary depending on your pharmacy and insurance plan.
7. Prepare a list of your medicines and dosage. Save it on your device. Keep hard copies. Always take this list to medical appointments.
8. Know the side effects of your medicines.
9. Know foods and drinks to avoid while taking your medicines.
10. Learn and practice how to tell people about your medical condition.
11. Know when your health gets worse and what to do when it does.
12. Wear medical alert identification, if needed.
13. Keep a list of and contact information for your doctors and other health care team members.
14. Plan for health emergencies. Talk to family members about your personal wishes.
15. Decide who will make your health care decisions if you are not able to make them for yourself.

How to find a primary care provider

• Ask care team members at your treatment center if they know of good primary care providers in your community.
• If you know childhood cancer survivors in your community, ask them who their primary care providers are.
• Ask family and friends for recommendations.
• Use the website of a regional medical system in your area to help find primary care providers who are taking new patients.
• Visit your health plan’s website and check its provider directory, which is a list of the doctors, hospitals, and other health care providers that your plan contracts with to provide care.
• Call your insurer to ask about specific providers. This number is on your insurance card and the insurer’s website.

How to make a medical appointment when you are a childhood cancer survivor

• Get the provider’s phone number.
• Call the office during normal business hours. These hours will vary depending on the practice. Business hours are usually around 8 a.m.-4 p.m. Monday-Friday.
• Give your name and the reason for your call. Let the office know if another doctor told you to call.
• Let the scheduler know that you will need extra time to talk during the visit because of your complex medical history.
• Have your insurance card with you. You will be asked information about your insurance policy. In some cases, you may be asked to register online.
• Make the appointment for a time that works for you. Have your calendar available.
• Have something to take notes with — either a device or pen and paper.
• Ask if there are any special instructions for your visit.
• Find out if a co-payment is required at the visit. Sometimes this information is on your insurance card. If not, look at your benefit plan or call your insurance company. A co-payment (or co-pay) is a fixed amount paid at each visit to a care provider. If it is required, have cash to pay or a debit/credit card.

Your first appointment with a new provider

• Check in at the front desk.
• Have your photo ID, such as a driver’s license.
• Take your health insurance card with you to the visit.
• Be prepared to pay your co-payment if one is required.
• Bring health information for the new doctor.
  • Your records of medical treatment and tests or Survivorship Care Plan
  • List of medicines you take and dosage
  • Your oncology team’s recommendations for screening tests after you finish treatment. These will also be in your Survivorship Care Plan.
• Talk with your provider about your past medical treatment, medicines, recent lab tests, and any screening tests your need. You may find yourself teaching your provider about your unique needs because some providers may not have cared for a childhood cancer survivor before. Be an advocate for your own health.
• Make sure the provider is comfortable caring for a childhood cancer survivor. Since childhood cancer is so rare, some providers may not be. Ensure the provider listens to you and takes your concerns seriously.

Inform your care team about new medical providers

• Give your care team at your treatment center the name and contact information of your new primary care provider and specialists.
• Sign a form that lets your cancer care team share information with your new doctor if you would like the team to speak with the doctors in your community.
• Have your prescription information sent to your new provider, so he or she can order the medicines.

Emma: My health is up to me

When I turned 18, I realized my health is on me. I'm not saying that my mom didn't go to every appointment with me anymore, but I really had to focus on what my health really meant to me.

Before I turned 18 my mom had to know every single thing about papillary thyroid cancer and what my doctors were saying. I tried to listen whenever I was 16 and 17. But I mean I was a teenager and wanted to just hang out with my friends all the time even though I was sick.

When I turned 18, I was signing papers and having to focus on my own health. That’s when I started to research everything. It really does help to know what my cancer is, how I should be treating it, and how I should be eating.

I'm 20 now. So that's important for me to know for the rest of my life. I'm not always going to have my mom there with me.

Emma, 20
College student majoring in public relations
Music lover
Thyroid cancer