Charity launches patient guide for rare type of non-smoking lung cancer

ALK Positive UK has today launched its new guide to help people diagnosed with ALK-positive lung cancer to ask the right questions of their healthcare professionals during medical consultations.¹ 

ALK-positive is a rare form of lung cancer, which typically affects younger people, often women, and the majority have never smoked. It is caused by a genetic mutation involving the anaplastic lymphoma kinase (ALK) gene and is usually diagnosed at an advanced stage (stage 4).^2,3

Called ‘Talking Points: A good practice guide on what questions to ask your healthcare team’, the booklet has been reviewed by clinical experts and a panel of people living with ALK-positive lung cancer. It also has PIF Tick accreditation (the UK’s independent quality mark for trusted health information).

Commenting on the booklet’s launch at the Lung Cancer Nursing UK’s (LCNUK) national conference in Glasgow, Julia McAdam, Lead Lung Cancer CNS, Shrewsbury & Telford Hospital NHS Trust, and Chair of LCNUK, said: “This is a really useful booklet for the ALK-positive community and I am happy that LCNUK nurses will be able to share it widely.”

Around 7,000 people are currently living with ALK‑positive lung cancer in England which can be extrapolated to broadly 1,400 new cases per year in the UK. ⁴

Debra Montague, Chair of ALK Positive UK, said: “This is an essential guide for those living with ALK-positive. Still little is known about this form of oncogene-driven lung cancer, even among clinicians, and there is an absence of national clinical guidance.

“This booklet will arm people with the right questions to ask their healthcare team – so that they can advocate for themselves and take an active part in decision-making. This will help ensure they receive the best possible treatment and care.”

The A5 booklet is available in hard copy to share with patients – or downloadable from ALK Positive UK’s website, here: https://www.alkpositive.org.uk/good-practice

References:

1. Talking Points A good practice guide on what questions to ask your healthcare team. Live from 18th June 2026: https://www.alkpositive.org.uk/good-practice
2. About ALK-positive lung cancer: https://www.alkpositive.org.uk/about-alk-p (mostive-lung-cancer
3. Prevalence and natural history of ALK positive non-small-cell lung cancer and the clinical impact of targeted therapy with ALK inhibitor. Chia PL et al. Accessed June 2026 at: https://www.tandfonline.com/doi/full/10.2147/CLEP.S69718
4. 123 Using Prescribing Data to Estimate the Number of ALK-positive Patients Currently Living in England. Edmonstone D, Montague D. Accessed June 2026 at: https://www.lungcancerjournal.info/article/S0169-5002(24)00229-0/abstract