My Diagnosis and Understanding of ALK-positive (anaplastic lymphoma kinase positive) lung cancer
Life can change in a single moment. For me, it happened during a routine heart scan. What started as a check on my heart health led to an unexpected diagnosis: ALK-positive lung cancer, the shocking discovery that completely shifted my life.
Finding out I had lung cancer was surreal. Even though ALK-positive lung cancer is relatively rare, there are treatment options that have improved outcomes. My oncologist explained that it is treatable, but not curable, and I was handed a pamphlet explaining what I could expect. Hearing that I wasn't going to have traditional chemotherapy was a relief.
"I felt a mix of fear, disbelief, anger, and ‘why me?’ syndrome. But, eventually, a cautious hope."
Suddenly, scans, tests, and appointments became the new normal. I was a bit apprehensive the first day taking my medication. The first few weeks were an adjustment. Like many treatments, it comes with side effects. For me, some were subtle at first but became more noticeable over time.
What I've learnt from two years on treatment
Two years in, I've learnt that life is about balance. The scans, managing side effects and emotional stress are all part of daily life. Even when everything looks stable, there's a constant underlying worry. Will the next scan show progression? ‘Scanxiety’ is real. The days leading up to imaging feel heavy and tense. Every cough, ache, or twinge triggers worry.
There's also the fear of drug resistance. There's always the possibility that the cancer could progress.
Learning to live with this uncertainty has been hard.
Cancer is not only a physical challenge, it’s an emotional journey from the moment of diagnosis. Looking after my mental health was as critical as managing side effects.
View the image below to learn about some of the coping strategies that help Indy manage the uncertainty in his life:
Moving Forward
So, what have I learnt so far? Life with ALK-positive lung cancer is about adaptation, vigilance, and hope. It has also shown me how powerful modern cancer research can be. For now, I continue taking each day as it comes and I’m grateful for the treatment and hopeful for the breakthroughs that tomorrow may bring. There is really a lot of hope with research, including clinical trials exploring different treatment approaches. This multi-pronged approach will hopefully make it a more manageable disease and may lead to better outcomes in the future. Some people are now living for many years with ALK-positive lung cancer, which is really encouraging.
A support network and family are so important. Networking through ALK positive UK (both local and national) has been a really big help. The local groups meeting every quarter to share similar experiences and the annual ALK-positive conference provides an insight into research trials and current treatments. This gives us hope.
The stories shared on this website are personal experiences, written in the patients’ own words. They reflect individual journeys and should not be considered medical advice or representative of all patient experiences.
Any images featured have been shared by the individuals themselves and are used with their explicit permission.
