Partnering with your care team: Taking an active role in your health

Living with a chronic condition like liver disease means you’re not just receiving care  —  you’re an essential member of your own health care team. Regular screenings, like the ultrasound and blood tests used to detect liver cancer early, work best when you actively participate: keeping appointments, asking questions, and staying informed about your health.  

Your care team is there to support you every step of the way, and your health plan offers tools to help you stay on track. 

Why your care team matters 

Chronic conditions require coordinated, ongoing care from multiple health care professionals. When you have liver disease, you may work with several specialists — your primary care provider, a hepatologist (liver specialist), radiologists who interpret your imaging tests, and lab professionals who analyze your bloodwork. Each plays an important role in monitoring your health and catching potential problems early. 

Regular screening for liver cancer is most effective when everyone on your team communicates well and you stay engaged with the process. Missing even one screening appointment can mean missing the window when liver cancer is most treatable. That’s why building strong partnerships with your providers matters so much. 

Who’s on your team? 

Understanding who does what can help you know who to call with questions and how to make the most of each relationship. Your liver disease care team may include: 

Primary care provider: Your main health care provider who coordinates your overall health care, reviews screening results, and refers you to specialists when needed. 

Hepatologist or liver specialist: The doctor who manages your liver disease, and monitors changes in your liver health over time. 

Radiologist: The specialist who interprets your liver ultrasound images and looks for any changes that might need follow-up. 

Lab technicians: The professionals who draw your blood for AFP testing and process the results that help monitor for liver cancer. 

Care coordinators or navigators: Some health plans and medical practices offer care coordinators who can help you schedule appointments, understand test results, and connect with resources. 

Pharmacist: Can answer questions about your medications, check for drug interactions, and provide guidance on managing side effects. 

Each of these professionals brings expertise to your care. Don’t hesitate to ask any of them questions — they’re all working toward the same goal: keeping you as healthy as possible. 

How to be an active partner in your screening 

Cancer screening works best when you take an active role: 

Know your screening schedule 

If you have cirrhosis and/or chronic hepatitis B virus (cHBV) with other risk factors, clinical guidelines recommend liver ultrasound and AFP blood testing every six months. This regular schedule is designed to catch any changes early, when treatment is most likely to be successful. 

What you can do: 

• Set calendar reminders for six months after each screening 

• Schedule your next appointment before you leave your current one 

• Don’t skip appointments, even when you’re feeling well — liver cancer often has no symptoms in early stages 

• If you miss an appointment, reschedule right away 

Ask questions about your results 

Don’t leave an appointment confused about what your results mean. Your care team expects questions — asking them shows you’re engaged in your health. 

Good questions to ask: 

• What did my ultrasound show? Were there any changes from my last one? 

• What was my AFP level? Is that normal for me? 

• When is my next screening due? 

• What symptoms should I watch for between screenings? 

• Do I need any additional tests based on these results? 

If you don’t understand an answer, it’s okay to say, “Can you explain that in a different way?” or “Can you write that down for me?” 

Understand what happens if results are abnormal 

If your screening shows something that needs follow-up, knowing what to expect can ease anxiety and help you take quick action. 

Questions to ask if you need follow-up: 

• What follow-up tests might be needed? 

• How urgent is the follow-up? 

• Who will coordinate the next steps — should I call, or will someone contact me? 

• What’s the timeline for getting follow-up results? 

• What are the possible explanations for this finding? 

Remember: An abnormal screening result doesn’t automatically mean cancer. It means your care team wants to investigate further to understand what’s happening. 

Communication tips for any health concern 

Clear communication with your care team helps ensure nothing falls through the cracks. Here are ways to make every interaction count: 

Come prepared. Before appointments, jot down any symptoms you’ve noticed, questions you have, and medications you’re taking. Even something that seems minor — like feeling more tired than usual — could be important information for your doctor. 

Be specific. Instead of “I haven’t been feeling well,” try “I’ve noticed increased fatigue in the afternoons for the past three weeks.” Specific details help your providers understand what’s going on. 

Speak up about concerns. If you’re worried about missing your screening window, having trouble affording medications, or noticing new symptoms, tell your care team. They can’t help with problems they don’t know about. 

Use real examples. When discussing symptoms or concerns related to your liver disease, mention specifics, such as: 

• “I’ve noticed changes in my energy level since my last appointment.” 

• “Can you explain what my recent AFP results mean and how they compare to my previous tests?” 

• “I’m worried I’ll forget a follow-up test or appointment, can we schedule these now?” 

Bring a support person. For important appointments, consider bringing a family member or friend. They can help you remember what was discussed and think of questions you might not have considered. 

Take notes. Write down key information during your appointment or ask for written instructions to take home. If your provider draws a diagram or writes something down, take a photo with your phone. 

Between appointments 

Your role in managing liver disease doesn’t end when you leave the doctor’s office. What you do between visits matters too. 

Track your medications. Take medications exactly as prescribed and at the same time each day. Use a pill organizer or smartphone app if that helps. If you experience side effects or have trouble affording medications, contact your care team right away — don’t just stop taking them. 

Monitor symptoms. Keep track of how you’re feeling. Note any new symptoms, especially: 

• Unusual fatigue or weakness 

• Abdominal pain or swelling 

• Unexplained weight loss 

• Yellowing of skin or eyes 

• Changes in appetite 

Keep a health file. Use your patient portal to access your screening results — both ultrasound reports and AFP blood test results. Having this information in one place helps you and your providers track trends over time and can be valuable if you see a new specialist. 

Know when to call. Some symptoms need immediate attention. Contact your care team right away if you experience severe abdominal pain, significant yellowing of your skin or eyes, confusion, or any symptom that feels suddenly worse. 

You’re a partner in your health 

Managing liver disease and staying on top of cancer screening can feel overwhelming at times, but you don’t have to navigate it alone. Your care team is there to guide you, answer questions, and provide the medical expertise you need. Your job is to show up, speak up, and stay engaged.