Why clear information matters in lung cancer care
When you understand your diagnosis and treatment options, you can take control of your care. Clear, accessible information will help you make confident decisions
A lung cancer diagnosis can bring a flood of medical terms, test results, treatment decisions, and unfamiliar language - all of which can feel overwhelming.
You deserve information you can understand.
Research shows that when people have clear, accessible information, they’re more likely to make informed decisions, feel more in control, experience less anxiety, and have better treatment outcomes.
But the reality is: only around 12% of adults have the health literacy needed to navigate complex medical information. Many leave appointments unsure about what they’ve just been told.
This isn’t your fault - it’s a communication gap the healthcare system needs to fix.
🔑 The key message: Clear information isn’t a luxury. It’s essential to your care. You have the right to understand your diagnosis and your treatment, fully.
What the Data Shows: Clear Info = Better Care
Lung Cancer Europe’s 9th Report (2024) found that:
1 in 3 people with lung cancer in Europe said they did not fully understand the information they were given about their disease.
Many said the language was too technical or rushed, and they didn’t feel comfortable asking for clarification.
Only 59% said they were satisfied with how their treatment options were explained.
Just 36% were offered supportive care such as counselling or psychological support at diagnosis - even though this can help people process difficult information and make more informed choices.
These figures highlight how big the gap still is between what people need to understand their diagnosis and what many are currently given.
“If I’d known what all the options really meant, I might have chosen differently. I didn’t feel I could speak up at the time.”
What you need to understand after a lung cancer diagnosis
There’s a lot to take in at the start. These are some of the key things your healthcare team should explain clearly and that you have the right to ask about.
What type of lung cancer you have
Non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC) behave differently and need different treatments. Knowing your type helps you find information that’s relevant to you.
Your cancer stage
Staging (I–IV) shows how far the cancer has spread. This affects your treatment options and outlook. Ask your team to explain your stage in plain language, not just numbers.
Renée lives near Utrecht with her husband, two grown-up kids and two senior rescue dogs. She was diagnosed with stage 4 ALK+ lung cancer in 2018. Now an ambassador for palliative care in the Netherlands, she helps others find support, speak up, and get the clear information they need.
Biomarker test results
For NSCLC, biomarker tests look for genetic changes in your cancer that might respond to targeted therapies. Knowing terms like EGFR, ALK, ROS1, KRAS and PD-L1 can help you talk through treatment options.
What happens next
Having a clear timeline of upcoming tests, appointments and decisions can help reduce anxiety and give you space to plan.
→ Tip: Don’t leave your appointment confused. Ask your team to write things down or give you a plain-language summary you can take home.
Understanding lung cancer information
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Medical language evolved for precision among professionals, but it creates barriers for patients. Healthcare providers often unconsciously use jargon because it's second nature to them.
Additionally, only 12% of adults have adequate health literacy to navigate complex medical information (VA Research, 2024). You're not alone in finding it confusing. It's a system-wide communication challenge.
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Use the "teach-back" method: after your doctor explains something, repeat it back in your own words ("So you're saying..."). This ensures mutual understanding.
Bring someone to take notes, ask for written summaries, and request that your doctor avoid medical jargon. Don't be embarrassed to ask questions. Healthcare professionals should welcome them.
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Start with 2-3 trusted sources like your hospital's patient information service, national cancer charities (e.g., Lung Cancer Europe, Cancer Patients Europe, Roy Castle Lung Cancer Foundation), or reputable medical websites.
Focus on information relevant to your specific type and stage. Avoid endlessly searching, setting time limits and taking breaks when anxiety increases.
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That’s completely OK. A lung cancer diagnosis can take time to process. You don’t have to ask everything at once. If you feel overwhelmed, try writing down questions as they come to you. You can bring a trusted friend or family member to help take notes or speak on your behalf during appointments.
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It’s not uncommon - especially if you’ve had a second opinion. Don’t be afraid to ask each doctor to explain their thinking clearly, including risks and benefits. You can also ask your main care team to talk it through with you. You have the right to understand your options before deciding what feels right.
Finding reliable information and making informed choices
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Both. Research shows that shared decision-making where you and your healthcare team work together leads to better satisfaction and outcomes. Your doctor provides medical expertise; you provide knowledge of your values, lifestyle, and goals.
The best decisions combine both perspectives. Studies show patient decision aids reduce anxiety and improve knowledge without delaying treatment.
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Look for: trusted organisations (cancer charities, NHS, hospital websites), evidence-based content (references studies or clinical guidelines), clear authorship (medical professionals, not anonymous), recent publication dates, and no commercial bias (not selling products). Avoid anecdotal stories presented as medical advice, miracle cures, and sites promoting unproven treatments.
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Information preferences vary greatly. Some want every detail, others prefer less. Communicate your boundaries to both your healthcare team and family.
You can designate a family member to receive detailed information while you focus on essentials, or vice versa. There's no "right" amount to know. What matters is that you feel informed enough to make decisions that align with your values.
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Yes. It’s your body, your care, and your decision. Sometimes new information, a change in how you feel, or a conversation with your team might lead you to choose a different path and that’s valid. Shared decision-making means you’re allowed to pause, ask more, or change your mind.
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It helps to be honest about how much involvement you want. You might ask someone to join you in appointments to help listen or take notes, while making clear that decisions are still yours. If you’re feeling pushed, let your healthcare team know, they can help support your wishes and set boundaries gently.
Treatment Options & Shared Decision-Making
Samantha lives in Ireland with her husband and four children. Diagnosed with stage 2 EGFR-positive lung cancer in 2023, she’s learning to adapt to life after diagnosis. Talking things through with counsellors, loved ones, and others with lung cancer, helps her feel more informed, supported, and less alone.
Shared decision-making means working with your healthcare team to choose treatments that match your values, lifestyle, and goals - not just following doctor’s orders.
Research shows that decision aids - tools that explain options, benefits, risks, and likely outcomes in clear and balanced ways - can improve understanding and reduce anxiety around making treatment choices.
What to ask about each treatment option:
How it works - in plain language, not medical jargon
What the likely benefits are - for example, “this may shrink the tumour and extend life by around X months”
What side effects to expect - and how they might affect your day-to-day life
What the treatment schedule looks like - how often, for how long, and where
What your other options are - including what happens if you choose not to have treatment
Many people find that visual tools like animations, diagrams, and simple comparison charts make complex information easier to understand.
A 2024 study found that using visual formats significantly improved patient understanding and reduced health literacy barriers. (Patel et al., Journal of Cancer Education, 2024)
At ESMO 2025, Lung Cancer Europe President Debra Montague spoke to a packed room about the power of shared decision-making in lung cancer. Her message was clear:
“When people with lung cancer are part of their treatment decisions, care improves. Healthcare teams are experts in the evidence. Those living with lung cancer are experts in what matters most to them. When people feel heard, communication improves, trust builds, and outcomes are better.”
This moment brought the voice of lived experience into a major oncology congress and showed why clear information, mutual respect, and partnership in decision-making are essential.
Medical language is full of unfamiliar terms, Latin phrases, and acronyms. For many people, it can feel like learning a foreign language - right when you’re at your most overwhelmed.
Common terms in lung cancer that can cause confusion:
Metastasis - when cancer spreads to other parts of the body
Adjuvant therapy - treatment given after surgery to lower the chance of recurrence
Neoadjuvant therapy - treatment given before surgery to help shrink the tumour
Progression-free survival - the amount of time during treatment when the cancer doesn’t grow or spread
Performance status a way of measuring how well you can carry out day-to-day activities
What can help:
Ask when you don’t understand something. It’s not rude - it’s essential.
Request written summaries in plain language after appointments.
Bring someone with you to listen, take notes, and ask questions.
Use trusted sources like hospital websites, national cancer charities, or printed leaflets that explain terms clearly.
Navigating Medical Terminology
Healthcare professionals have a responsibility to explain things in ways you understand. But it’s always OK, and important, to speak up when something isn’t clear.
Avoiding Information Overload
Quality matters more than quantity: One clear, accurate explanation is better than ten confusing ones.
Having access to information can be empowering. But too much, from too many places, can quickly come overwhelming.
Around 75% of people with cancer experience information overload, feeling bombarded by conflicting or excessive details. (Patient Education and Counselling, 2024)
Signs you might be overloaded:
You feel more confused after looking things up
You’re not sure which sources you can trust
Searching for answers increases your anxiety
You’re seeing conflicting advice or data
Ways to manage it:
Choose 2 or 3 trusted sources. This could be your hospital team, a national cancer charity, or a reliable medical website.
Search with purpose. Try to answer one question at a time rather than scrolling for hours.
Ask your healthcare team to recommend resources.
Take breaks when it gets too much.
Focus on what matters right now. You don’t need to understand everything all at once.
Getting a second opinion doesn’t mean you’re being difficult or ungrateful. It means you’re taking an active role in your care and that matters.
Getting a Second Opinion
Seeking a second opinion is common, reasonable, and often encouraged. It can be especially helpful when the diagnosis is complex or when you're facing a major treatment decision.
When to consider a second opinion:
Your diagnosis is rare or complicated
The treatment plan feels unexpected or unclear
You’re unsure about the recommended approach
You want reassurance that all options have been explored
How to go about it:
Let your current doctor know. Most support second opinions and will share your records
Choose a lung cancer specialist, ideally at a centre with experience in your type of cancer
Bring everything you have - scan results, pathology reports, test results, and treatment notes
Prepare specific questions. Ask about alternatives, clinical trials, or anything you're unsure about