Clear Information

Understanding your diagnosis, treatment options, and next steps is your right. Clear, accessible information helps you make confident decisions about your care.

Why clear information matters

A lung cancer diagnosis brings a flood of medical terms, test results, treatment choices, and decisions that can feel overwhelming. You deserve information you can understand. Research shows that when patients have clear, accessible information, they make better decisions, feel more in control, experience less anxiety, and often have better treatment outcomes.

Yet studies reveal significant gaps: only 12% of adults have adequate health literacy to navigate complex medical information, and many patients leave appointments unsure about what they've been told. This isn't your fault but rather a communication challenge that the healthcare system must address.

👉 The key message: Clear information is not a luxury, it's essential healthcare. You have the right to understand everything about your diagnosis and treatment.

What types of clear information do you need?

Understanding Your Diagnosis

When you're first diagnosed with lung cancer, you need to understand:

What type of lung cancer you have

Non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC) behave differently and require different treatments. Knowing your specific type helps you research relevant information.

Your cancer stage

Staging (I-IV) describes how far the cancer has spread. This affects treatment options and prognosis. Ask your doctor to explain your stage in plain language, not just numbers.

Biomarker test results

For NSCLC, biomarker testing identifies genetic changes in your cancer that may respond to targeted therapies. Understanding terms like EGFR, ALK, ROS1, KRAS, and PD-L1 helps you discuss treatment options.

What happens next

A clear timeline of upcoming tests, appointments, and decisions helps reduce anxiety and allows you to plan.

👉 Don't leave your appointment confused. Ask your healthcare team to write down key information or provide it in plain language summaries you can take home.

What should I know about lung cancer information?

  • 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.

  • 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.

  • 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.

Here we answer some of the most common questions - from being involved in decision making to finding reliable trusted information

  • 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.

  • 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.

  • 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.

Treatment Options & Shared Decision-Making

Shared decision-making means working with your healthcare team to choose treatments that align with your values, lifestyle, and goals and not just following doctor's orders.

Research shows that patient decision aids (i.e., tools that present treatment options, benefits, risks, and likely outcomes in clear, balanced ways) significantly improve understanding and reduce anxiety about decisions.

What you should understand about each treatment option:

  • How it works (in plain language, not medical jargon)

  • Likely benefits (e.g., "this may shrink the tumour and extend life by X months on average")

  • Possible side effects and how they might affect daily life

  • Treatment schedule (how often, for how long, where)

  • Alternatives and what happens if you choose not to have treatment

Visual formats like animations, diagrams, and comparison charts help many people understand complex information better than text alone. A 2024 study found that visual learning formats significantly improved patient understanding and reduced health literacy barriers (Patel et al., Journal of Cancer Education, 2024).

Navigating Medical Terminology

Medical language is filled with unfamiliar terms, Latin phrases, and acronyms that can make conversations with healthcare teams feel like learning a foreign language.

Common confusing terms in lung cancer:

  • Metastasis = cancer spreading to other parts of the body

  • Adjuvant therapy = treatment given after surgery to reduce recurrence risk

  • Neoadjuvant therapy = treatment given before surgery to shrink tumours

  • Progression-free survival = time without cancer growing or spreading

  • Performance status = how well you can carry out daily activities

What you can do:

  • Interrupt and ask when you don't understand a term. It's not rude, it's essential

  • Bring someone with you to appointments to take notes and ask questions

  • Request written summaries in plain language after consultations

  • Use trusted resources like patient information leaflets, hospital websites, or national cancer charities that explain terms clearly

Healthcare professionals have a responsibility to communicate in language you understand, but don't hesitate to advocate for yourself when something isn't clear.

Avoiding Information Overload

While having information is empowering, too much information from too many sources can create anxiety and confusion. Research shows that approximately 75% of people experience cancer information overload, feeling bombarded by conflicting or excessive details (Patient Education and Counselling, 2024).

Signs of information overload:

  • Feeling more confused after researching online

  • Struggling to distinguish reliable sources from unreliable ones

  • Anxiety increases rather than decreases when seeking information

  • Conflicting information from different sources

Strategies to manage information:

  • Identify 2-3 trusted sources (e.g., your hospital's information team, a national cancer charity, reputable medical websites)

  • Limit online research to specific questions rather than endless browsing

  • Ask your healthcare team to recommend reliable resources

  • Take breaks from information-seeking when it becomes overwhelming

  • Focus on what you need to know now, not everything about every possible scenario

Quality matters more than quantity. One clear, accurate source is better than ten confusing ones.

Getting a Second Opinion

Seeking a second opinion is common, reasonable, and often recommended — especially for complex diagnoses or when major treatment decisions are involved.

When to consider a second opinion:

  • Your diagnosis is rare or complex

  • Treatment recommendations differ significantly from what you expected

  • You feel uncertain about the suggested treatment plan

  • You want reassurance that all options have been explored

How to approach it:

  • Tell your current doctor. Most healthcare professionals support second opinions and will provide your medical records

  • Choose a specialist at a cancer centre with expertise in lung cancer

  • Bring all records including scans, biopsy results, and treatment plans

  • Prepare questions about alternatives, clinical trials, and specific concerns

A second opinion doesn't mean you distrust your doctor — it means you're taking an active role in understanding your options.