Patients told us how lung cancer treatment and care could be improved:

You can also download these priorities as a PDF in your own language

• A quality patient-professional relationship

  At the heart of lung cancer treatment and care there needs to be a quality patient-professional relationship. Read the tips in the section below on how both patients and healthcare professionals can achieve this.

• Positive communication with tailored information

  • Treat each of us as individuals with respect, hope and positivity.
  • Communicate with us clearly and concisely.
  • Tailor the information that we need to our individual requirements.
  • Promote the availability of research in multiple languages.

• Better access to quality services

  • Improve our access to rehabilitation services following treatment.
  • Give us the option to access psychological support from the point of our diagnosis onwards.
  • Provide one main contact throughout the full course of our treatment and care.
  • Develop quality criteria for lung cancer services to encourage equal provision for all across Europe.

• Involvement in treatment options

  • Discuss all our options with us including the latest advances in treatment.
  • Find out our preferences; for example, whether quantity or quality of life is more important.
  • Involve us in multidisciplinary team discussions and decisions.

• Improved training and education

  • Provide mandatory and refresher training for healthcare professionals including: how to build relationships; awareness of the psychological impact of diagnosis.
  • More patient education resources so that we can advocate for ourselves.
  • Improved training at primary care level to increase general awareness of lung cancer symptoms.
  • Public education campaigns to tackle stigma and to raise awareness of lung cancer symptoms and risk factors.

How to build better healthcare professional and patient relationships - developed by patients and caregivers with experience of lung cancer.

You can also download these tips as PDFs in your own language

• If you are a healthcare professional

  • Get to know us as individuals - our experiences are not the same.
  • Treat us with respect, warmth and care.
  • Communicate with us clearly and consistently (verbal and written).
  • Give us the information we need at the level we want it.
  • Tell us about the best and most recent treatments available
  • Discuss our options with us and treat us as an equal partner in decision making.
  • Be positive and offer us hope even when our options are limited.
  • Recognise that we are the experts in living with lung cancer every day.
  • Be aware that our family members may have different information needs to us.
  • Do not blame us for having lung cancer and help to overcome lung cancer stigma.

• If you are a patient

  • Remember you have the right to be respected as a person and not viewed as a medical case.
  • Prepare for your appointments, for example plan your questions in advance.
  • Be honest when discussing your day to day experiences of lung cancer.
  • Ask questions about what you need to know - there are no stupid questions about cancer.
  • Ask for further clarification if you do not understand.
  • Ask for advice on what to do if you are unsure about something.
  • Challenge professionals if you want to question something they have told you.
  • Offer support to professionals where you can, for example write to the hospital if there are resource issues to address.

With so much information on the internet, sometimes it is hard to find the truth. Our top 5 lung cancer myths debunked.

• 1 Being diagnosed with lung cancer is a death sentence

  Advances in research mean that new treatments are coming along all the time and have helped to increase how long people with cancer live for.

  How long an individual person will live depends on many things.

  If the cancer is caught early enough it may be curable, and even if it is not curable it is still treatable and with good response rates.

• 2 Only smokers get lung cancer

  Although smoking is the single greatest risk factor for cancer, not all people who develop lung cancer have smoked.

  Exposure to second-hand smoke and other substances such as air pollution (including radon gas) increase the risk.

  The number of people who have developed lung cancer and not smoked varies in different studies with the figures being 10% in one and 28% in a recent study.

• 3 Molecular testing is not suitable for my type of lung cancer

  Molecular testing may help to find out more about the type of lung cancer tumour you have and help decide which treatment is most likely to work for you (such as targeted therapies).

  If you have NSCLC (non-small cell lung cancer), then molecular testing is most likely to be recommended. Sometimes there is a reason why molecular testing may not be suitable for you so ask your physician to explain if this is the case.

• 4 It is only a cough - why should I worry?

  The first signs of lung cancer are often a cough that does not go away and shortness of breath. If you have a chronic cough (that lasts for more than 3 weeks) get it checked out.

• 5 I am too young to get lung cancer

  
  

  Lung cancer is more common in older people (in their 60s and 70s, but it can also occur in people at a much younger age and is diagnosed in people of all ages e.g. carcinoid tumours can affect young people.

• Healthy lungs for life

  • Healthy Lungs for Life is one of the largest lung health campaigns, raising awareness of the importance of healthy lungs through a wide range of events projects and promotiona activities.
    
    Find out how you can get involved.

• European Patient Ambassador Programme (EPAP)

  The European Patient Ambassador Programme (EPAP) is a self-learning online programme giving you skills and knowledge to represent yourself and others successfully and to interact with healthcare professionals, policymakers, researchers and journalists.
  
  It is available in English, Dutch, Italian, Portuguese and French.
  
  By acting as a representative, and getting involved in a range of ways, you can help change the way your condition is managed.
  
  Watch a video (in DE, EL, EN, ES, FR, NL, PL, RU to find out more.
  

• SmokeHaz: lung health and smoking

  SmokeHaz is a collaboration between the European Respiratory Society (ERS), European Lung Foundation (ELF) and the UKCTAS.

  We joined forces to provide a website aimed at policy makers focused on the lung health hazards associated with smoking.

  Includes evidence on how active smoking and passive smoking increase the risk of lung cancer.

• Manifiesto contra el cáncer de pulmón (ES)

  El Manifiesto contra el Cáncer de Pulmón (Manifesto against lung cancer) - Asociación Española de Afectados de Cáncer de Pulmón, AEACAP
  

• Lung Cancer Europe (LuCE)

  Lung Cancer Europe (LuCE) is the voice of lung cancer patients, their families and survivors at a European level and aims to raise awareness of lung cancer through:

  • Raising awareness about inequities regarding the access to lung cancer treatment and care in Europe.
  • Advocating European policies that will lead to improvements in lung cancer prevention, early detection, treatment and care.
  • Supporting national lung cancer patient groups in helping to raise awareness for lung cancer among the European public.

  Read an interview with past Chair of LuCE about their activities.